Being ‘the disabled one’ in university [CC]


Hello lovely people, Welcome to a video in which I’m probably
going to cry a lot (you’ve been warned) and talk about my experience of going through
university with a disability. I mean it’s stuck up there with washitape
so what are we expecting(!) It’s the follow up to my ‘disabled in
school’ video which… I uploaded in June 2017. So… just a little late then(!) I’ve put off making this video because university
wasn’t a very happy time for me. In fact, it was an actively unhappy time. That cost
me £35,000. But it’s fine… it only hurts when I talk about it. If you’re new here, hi, I’m Jessica, I
make videos twice a week, generally about my own painful life lessons from being genetically
deficient and the things you can learn from them to hopefully better your own life. Subscribe
if you enjoy humorously harrowing admonitions! In retrospect, I probably did all of the wrong
things and made terrible choices and thus… perhaps this video is just me getting everything
wrong over and over again by way of advice on what you should not do because if there
is one thing you need to know it’s: don’t be me. I was born with two genetic disabilities:
one that affected my nerves and one that affected my connective tissue. So basically: I have
great teeth and bones, the rest is highly suspect. This gives my body such a beating that I have
what I call a ‘chronic illness’: being in a state of having a cold at all times.
You know when you feel lousy and your body aches all over and you’re exhausted and
a bit sick-y? That’s me all the time. But throughout my childhood no one really believed
me so I became a wonderful actress because I just had to pretend that I wasn’t in pain
all of the time. Oddly it made me very optimistic and chirpy!
So that’s good. that’s good By the time I went to university I was already
out of step with… my life… it felt like. Right at the end of my penultimate year of
school I became very ill, damaged my brain, paralysed my arms because of illness- as you
do!- and then everything just got so messed up… I’ve talked to a number of publishers (side
not yay) who want me to write a memoir about being suddenly incredibly ill and effectively
becoming disabled and coping and- but I was so ill and it damaged my brain to the extent
that I cannot tell you everything that happened because all I have are snapshots from a frayed
timeline that float out of sync and I honestly cannot always tell what’s real… Did that
happen? Or was it just a passing thought I had that year because my brain has logged
them as the same and I can’t tell you which is which and… I’m trying to reach into my mind for facts
and concretes and dates but… I have foot drop in my left foot. I tore the
ligament and that damaged the nerves so now my brain doesn’t really recognise my left
foot. It’s there. Obviously it’s there. I can see it. But the nerves make it feel
as if it’s not. So I liken it to walking on jelly- as if my foot is a gelatinous blob
attached to the end of my leg and I just have to trust that it is there. Because it probably
is. Maybe. And when I walk I just have to trust that it will move, that it will land
and that it will take my weight. That’s how my memories work. And sometimes
it’s terrifying. A person I met breifly in a shop one Saturday may know more, own
more of my entire weekend than me. Because they at least remember five minutes and I
remember nothing. I just have to trust. So hey, I’m going to tell you about my experience
of being disabled in university. And overwhelmingly the only bits of it I can really grasp are
negative. But that doesn’t mean it didn’t have positives. And if you knew me at university
and we had wonderful fun together, me not remembering it doesn’t make the goodness
any less real. And I don’t want you to think that this video means it does. Memory loss: it hurts. It really, really hurts. But what I meant by ‘messed up’ when I
was referring to my schooling was both that my memory is fuzzy but also… just that everything
was fuzzy in person. I had to re- … okay that can just live like
that now. [laughs] I had to ‘redo’ the year of school,
even though I didn’t go to any classes, I just had to wait out the year for the exams
to come again. And I’d sometimes go in and see people… but now all of my friends weren’t
really talking to me and there were certain classes I couldn’t do, like maths, because
I had temporarily paralysed arms and needed to dictate in exams and apparently that’s
not possible in maths. I don’t think that stopped Steven Hawking but fine. I was going through something that was really
hard and I just felt incredibly alone. I took the exams at the end of the year and
by then my own year group had left. But I was still a year behind… but I was now too
old to be allowed to go to school. So I was moved to a college. And… I think I was doing an art diploma? Which seems like an odd choice now. All I remember is that there were twins. And
quite a few people were scary. It was with other teenagers who hadn’t managed
to make it through school. Maybe it was meant to be a therapeutic thing? I don’t really
know what happened to that… but I didn’t finish it. Maybe I was also doing some A Levels at the
same time? I think a teacher from my old school came
to my house. But I also have memories of doing two years
of the English Literature A Level in one year. And there was a lesbian in that class and
a blonde girl. [lights fall] Okay… I mean honestly, all I wanted was some pretty
bokeh lights. Is that too much to ask for? To be honest it is a good thing this light
drama is happening because otherwise I’d have to cry through this video and that would
just be uncomfortable I guess. Also I was on a long term hospital ward and
it had an exercise bike with a really nice chair seat and I’d just sit on that and
peddle slowly as I read my course books over and over and over again. Also I went to London for two months and filmed
a TV show called Britain’s Missing Top Model. Which was wild… and awful. Somehow that all adds up to four years? If you have even the slightest grasp of what
the hell happened in my teenage years then you’re doing better than me. One of the things that kept me going, and
I remember it so clearly, was the dream of going to university. Before I got ill ( was
always ill but ‘iller’, I suppose)- before then, I’d had very clear life goals. I was the type of girl who colour coded her
wardrobe and made a chart in order to ensure I never wore the same combination of clothes
to school. Did anyone care or notice that I wore a different, fabulous outfit every
day? No. But I wasn’t doing it for them. I was doing it for myself. And my life plans were equally meticulous. I was going to go to Durham university. I’d
made my decision very early on and I wasn’t going to be swayed from it. Durham is a collegiate university, like Oxford
and Cambridge, meaning that it has seperate little colleges within one university. Like
houses in Harry Potter. You can choose to live within the college building, where they
serve food, have a common room, a library, their own sports teams… it’s really cute. I loved it because it was small and, I’m
sure some would think, claustrophobic but that’s what i wanted. I’d gone from a very small Quaker secondary
school, with only 30 people in my entire year, to a state school with 300. And then that
college thing. So I wanted the kind of place where everyone knows your name and your business. Spoiler: that probably would have been the
best option for me. It didn’t happen. And so here we come to my number one piece
of advice, the most essential thing of all: don’t make decisions based solely on your
disability. Sure, it’s important. Yes, if you’re a regular wheelchair user going to
a university spread out over a cobbled city with terrible transport links and no ramps
is probably a bad idea. But… our disabilities aren’t all that we are. I got into two universities: Brighton and
Durham. Non-British people, to help you understand
the difference: for ‘Durham’ hold in your mind whatever university comes after Hogwarts
but it’s a tiny city on a hill and it’s really ridiculously pretty. For ‘Brighton’
imagine an old seaside fishing village but it’s actually full of hard-partying arts
students who put things that might not be legal into their bodies. Which did I go to? Brighton. Obviously(!) I went to visit Durham university for a weekend
and I loved it and they were so sweet with explaining exactly how they could help and
showing me this special bedroom they had adapted for another disabled student who was about
to graduate… if that keeps happening… I just, I just, I just… The library was amazing and academically it
was everything I could have asked for. I clicked with every person I met. It fit my ‘a type’
personality perfectly. And my goals. BUT it was really difficult to get around
because I can’t walk very far but there were too many steps and cobbles for my wheelchair
and cars couldn’t go everywhere and… it was also very cold because it’s in the north
of Englad and there was no direct train down to my parents’ house. I would have been
really far away from them and from the support system I had in place. It seemed like too
much for my body. [lights fall] WOW So ok, I probably built that up in my mind
a little bit but it was just what I really wanted and I was really ill and it kept me
going. It seemed like too much for my body and people
around me said it was too academically challenging, that I shouldn’t put myself under stress.
I should go for the easier course in Brighton. Brighton is a much newer university. All of
the courses are really… ‘hip’. Everyone who goes to Brighton is quite emphatically…
‘cool’. I am… the antithesis of ‘cool’. Clearly. But the city was warmer (which is much better
for my connective tissue condition), only half an hour away from one of my aunts, had
a direct train back to my parents and supposedly a great public transport system. The halls
were newer and built to be wheelchair friendly. They had a really big disability department
who had been dealing with every type of disability and knew what they were doing and… Sure it just seemed like the smarter decision:
go with what my body needs, not with what I want. Also my mother told me that since Brighton
is ‘the gay capital of the UK’ I would definitely find a girlfriend there. It took me five years. But I finally found
her! The day before I graduated. Aside from my pitiful lovelife, university
didn’t go well for me to start with because… for some strange reason we decided that I
could definitely handle a full-time university course. Despite my having spent the previous
three years doing not much else but being ill and two of those years just being on bed
rest. Funnily enough university is very demanding,
as is moving away from home for the first time, as is having a body that needs so much
looking after it’s basically like having an infant to care for! When I first started looking at universities
I was told that only 5% of disabled students studied away from their home town and… wow,
did I understand that figue once I actually got there. I was put up in accessible student accommodation.
A big block of flats where we each had our own room with an en suite and then shared
a big kitchen. So we all had to cook our own meals and look after ourselves. I had a block
of three hours of care every morning in which someone from a care agency would come in and,
help with my needs, do any tidying I needed, go and get pills from the pharmacy or shopping
or whatever, help me shower. But then they would leave. It rapidly became clear that whilst I don’t
need round the clock care there is something very different about having people in the
house with you at all times, even if they’re in a separate room, and having just three
hours of intense ‘I am here to do what you tell me to do’ but then nothing for 21 hours.
Wow… My condition is variable, it fluctuates. I
would have days where I was so ill I couldn’t lift my head and the carer would have to just
leave me food and drink by the bed and then go… so I was alone until someone came the
next morning. Just lying there. Unable to get up I’ve talked about this in my ‘having a
carer in my 20s’ video but the type of care I need is more piecemeal: little and often. Instead I forgot to eat, forgot to take my
pills, forgot which day it was and when I had to go to class and lived in a constant
state of panic that because I couldn’t remember everything there were important things I was
forgetting… and I knew that. If I had a big problem that required more
than three hours care I would have to get my mother to drive from four hours away to
come and look after me which I know she didn’t like doing, Which is not to mention how much I was struggling
just trying to communicate because if you’re new here and you don’t know it yet, hi,
I’m deaf. Deaf deaf. Like, actually deaf. Like the kind of deaf that means you struggle
to communicate with other humans, particularly when flustered and stressed and at university
for the first time and oh yes the government messed up and so you won’t be able to have
a sign language interpreter for the first term of university. Good luck you are on your
own! If you know me, you know I’m a chatty outgoing
person but I just… hid. I just retreated inside myself because it was all too much,
it was just too scary. I couldn’t cope. So lesson two: don’t move away from your support system. Or at least make sure that
there really is one in place before you make the jump. Think about what you really need
and if that is occasionally for someone to pick you up off the bathroom floor when you
can’t stand or hold your head up, tuck you into bed and make you soup… it’s probably
not a great idea for that person to be four hours away. Which moves us on to lesson three: be honest
with yourself about what you can manage. At the end of my first year of university I was
quite genuinely on the brink of death. I don’t mean that in a throw away, ‘wow
it went really badly’ way. I mean it in the quite literal ‘oh god, this is real’
way. I lost three stones in weight that year. I got a bad infection and couldn’t eat.
My room was really filthy and so was I because I just didn’t have the energy to take a
shower. No one was there to make me. You could see every one of my ribs and I was a hermit who didn’t leave my room.
I was so scared all the time. I have no idea how I passed that year… but
no one ever told me I failed so… I fought with my parents to return to university.
Not because I particularly wanted to, more because what the hell else was I going to
do with my life? In no way could I manage a full time university
degree along with living by myself along with looking after my pretty broken body. One of
those things had to give. I switched my course to something in a similar
field (film and screen) but with less ‘we’re going on a field trip to london for a project’
type coursework and more ‘sit and watch these films’. And I went part time… except
I didn’t because that’s not how the very broken education system works. Basically,
I couldn’t get the financial help I was entitled to as a disabled student, that paid
for my sign language interpreter and note taker in class- Side note: you need a note taker when you’re
deaf because you’re busy using your eyes to understand the words, not your ears. You
can’t then be using your eyes to write and your ears to take in the information. The disability department at the university
will organise all of this but because they work with such a broad spectrum of disability
that doesn’t mean that they necessarily know how to deal with your specific needs
so you need to be quite bold in creating an action plan with them. I found that out the
hard way. They were really great when it came to my dyslexia: I got a free laptop! And a
printer and extra time in exams. Wonderful. But when it came to being ill… uh… they
were more used to students who were skiving off than they were people who really, really
wanted to go to class but were too ill. On the days when I couldn’t make it to class
I had to phone the disability department (yes, phone, I couldn’t do it by email or text)
and give them a good reason why I couldn’t go to class. Just picture me: utterly exhausted,
in the middle of a splitting migraine, so unwell I can’t make it two meters to the
sink to get myself the water I desperately need, phoning someone with no clue about whether
they have even picked up the phone and then just randomly talking in the hope that someone
is listening and not only that but that they believe me because if they think I’m just
a regular partying student with a hangover they can charge me for the interpreter and
note taker who would have had to go to my class. I couldn’t get the money for that if I was
only enrolled as a part time student so the university had to enroll me as a full time
student but I chose half of the modules to go to and do the work and then just had to
fail half of them to be retaken the next year when I was technically ‘repeating the year’
because I’d failed. So I went through university with four different intake years in the end…
which made it pretty hard to make friends. I took part in extra curriculars though: drama
club and cheerleading although I was utterly unreliable and probably terrible at socialising
because I didn’t know then what I know now about even simple things like asking people
not to turn away when they’re talking to me or not to cover their mouths. I probably
just nodded a lot and said things that didn’t really relate to what they were talking about
because I just desperately wanted to be included and part of something and not feel like that
weird kid who gets trotted out for special occasions and the others have to play with
because it’s that’s the nice thing to do. Not that anyone made me feel like I was the
weird kid. I was an isolated hermit crab who wanted to make friends more than I wanted
anything else in the whole wide world. And sometimes I did. I had fun. I don’t remember
it. But I know I had fun. Sometimes my memories are just snapshots,
like a thumbnail I’ve managed to save when I lost the original video… I once stayed
in a club until it closed and walked home with them as we laughed. I have this photo
in my mind of them walking in front but they’ve turned and they’re smiling. I must have
been in bed for days recovering but that’s a nice memory to hold. I think I made some people laugh and I organised
the most profitable bake sale the cheerleading squad had ever had. I remember snapshots of
talking people into buying cakes, which is something I’m weirdly good at. I didn’t
exactly do a lot of cheerleading but I had the uniform and that made me happy. Lesson four: don’t isolate yourself. It’s
terrifying being different. It’s terrifying being visibly different. And it’s terrifying
being not visibly different because you have to explain so many times that really sometimes
you would actually like a massive, flashing neon sign over your head that says ‘disabled!
Could you just give me a minute here?!’ Everything moves so quickly when you’re
a student and whatever your type of disability, I think we all just need an extra 60 seconds
to deal with whatever the hell is going on now! I shut myself away in my room a lot of the
time and I felt incredibly unsafe constantly. I lived in halls for three of my five years
at university and every month someone had Every month? Probably every week. to have a loud party in the kitchen with random
drunk people I didn’t know and I couldn’t lock my door because then how would someone
come and rescue me if I have a problem? It’s not their fault, I wasn’t someone
else’s burden. I was my own. Look, I don’t want to put you off university This is not what this video is about. I don’t want to say that it’s too
difficult to do when you have a disability or other needs. And
please do not ever let anyone tell you that YOU’RE the problem or that YOU’RE creating
extra difficulty. It’s the system that has problems and needs to become more flexible
and I’m sure every year it gets a little bit better. The long and short of it is: I followed my
dream of going to university. I made bad choices along the way because I both over and under
estimated my own abilities. I should have gone with what my heart desired, this course that I wanted to do and made the
system bend around it rather than choosing the option that looked better on paper. I chose a university for the gayness and the
disability help but didn’t think about who I am as a person and what kind of university
I wanted to go to. If you think university is the right choice
for you then don’t let anyone stop you! …but also, make a good plan beforehand.
And check in with your inner voice. And the local government to see what help
is available. Because only 40% of students eligible for
Disabled Students Allowance actually apply for it! Because 60% of students have never
heard of it! DSA is the UK-wide fund that can provide up to £30,000 for support including
assistive computer software, transport, mentors or British Sign Language interpreters. But good luck learning about it from school
or college because only 5% of people eligible were informed about it by their
educational establishment. Cool. Excellent. Thanks school. Unfortunately you’re going
to have to do your own homework on this one. Again. [deep sigh] Did you go to university? How was it? Please
share your stories with me in the comments so I don’t feel so alone in not having loved
the university experience. And while you’re down there, take a look
at the merch shelf where all items will be 15% off until the 16th February to make way
for a Valentine’s Day makeover! (because I’m going to get my life together and do
that) Snap up your favourite items now because they might not be around for long… Thank you for watching and I’ll see you
in my next video! [kiss]

100 Replies to “Being ‘the disabled one’ in university [CC]”

  1. I had to drop out of community college because of what we would later learn was PTSD and schizophrinia among other things. I just could not keep up with the course work anymore and I was having panic attacks every day. It just got to the point where I couldn't make myself do it anymore and when I finally broke down and ended up calling my dad from the bathroom because I was literally having a full on mental breakdown, he finally allowed me to drop out. Things are getting better though. I'm not able to work anymore because I have agoraphobia, however I am training a service dog to help me. He will be mostly an in home Service dog but that is because I hardly ever leave my house now.

  2. Oh, I just want a time machine, so I can go back in time and make you soup and help you out and tell you that you would soon meet the love of your life and inspire hundreds and thousands of viewers. Then I want a teleporter to catch up with you today and administer a hug and say, "Thank you for the courage it took to make this video." No pity, just admiration!

  3. I avoided seeing this video. I've been processing a lot of stuff relating to my CP and body image that I'd been repressing for years and it's all right near the surface lately. I'd also been pretending everything was fine because I was so detached from my needs I didn't realize how much people's reactions hurt me emotionally, or how much sitting on the floor hurt me physically. I didn't really process it because that would make people uncomfortable and I tried to hide it, even from myself. I was so mad at myself for being in pain and being anxious. I worked as a parking guard for a year even though standing on my feet for six hours gave me terrible blisters, but I had to work somehow and my anxiety wasn't exactly helping me in interviews for more intellectually demanding work. Watching your video is bringing all of this back to me and there's all sorts of constant new shit I'm still processing and it can be so isolating not having any disabled friends that would understand. So I just want to thank you for being so open about all this stuff and helping me grieve, Miss Kellgren-Fozard.

  4. Thanks, dear Jessica for this video! <3
    I share very little my experience being right now an university studen with an increasing disability.
    I play the piano since I've six. Now, in my 22, I studied the University Degree on Musical teaching. My great teachers have seen how my disability increased over the years (3, to be exact). I think I run with the advantage that I have been with them for 15 years, but in the process of accepting that something really happens with my body, which affects my hands and my ability to play as I want, I made the mistake of thinking that nobody would care and that my life as a musician (life in general, as I conceive it) was over forever.
    But then, when I started talking, to express my deep distress for not being what they expected of me and my great feeling of guilt for wasting their time on someone who was not advancing. It was they who kicked the ass at my ableist thought.
    At this moment, with them accompanying me, I feel that it's easier to seek and ask the university for consideration about my building, learning needs.
    Right now, they are drawing the plans for the new bulding of the music area and I don't know if it will have accessibility. But, what gives me strength to be able to ask and fight for that is the accompaniment of people I thought I would never have (for their role as teachers and others).
    We will always have the support of loved ones and we should not be afraid to ask for what we need. That's why videos like yours, Jessica, are so important.
    Thanks from my heart!

  5. I loved my university and my university town.
    But I had some terrible choices that I understand now how I could have avoided making myself so ill. because my being ill started in Uni and I tried SOOO hard to pretend it didn't. That it ddin't exist. To the point where all I could do when I sat down was sleep for hours and miss whatever I had planned. And I was in so much pain all the time and just had no idea how to cope.

  6. I really had a similar experience with university. I definitely overestimated myself, but now that I've had some time away from it and I've learned how to cope with my illnesses better, I'm very glad to start going back soon. Thank you for sharing your story. I have memory problems as well and I've never heard anyone talk about that. It feels validating to hear that it isnt just me, that I'm not just stupid or crazy.

  7. I should have applied for help services, but since my condition is still up in the air I just…didn't. I also didn't realise how messed up my body was until like the 2nd year of university? I thought everyone fainted if they stood up too quick, or it was just because of my anaemia. Nope lol. I once had my thesis advisor ask if I could get extra time to do my assignments (side note hilarious that she didn't know that, even the professors were ill equipped to deal with the disability services so made me feel better) and I said yeah probably, but they need some kind of proof, how am I meant to prove my hyper mobility is super painful when I haven't even gotten doctors to figure it out yet. The real kicker is though, my friend got hit by a car and broke her leg in the last year of uni right, and to finish an honours degree you have to do an internship of 150 hours. They still made her do it even though she was in excruciating pain and a wheelchair, with no help. There was no way to say "sorry I can't physically do this for my fine art degree, didn't realise I'd have to do this much physical activity when I signed up". You can't graduate without it.

  8. You almost described my entire experience at uni. I also was very unwell just prior, and while at uni and away from home a good distance for the first time. I LOVED the learning aspect, but the setup and lack of informed direction from advisors left me muddling through. I eventually had to come home. I did not graduate, but I also don't see that time as a particular true failure of mine…I learned A LOT about the core of who I am during that time…the good the bad and the ugly.

  9. I’m at uni for med atm and it’s actually shocking how bad the school, particularly the faculty at the MEDICAL school and the students are at understanding and accommodating for disability. From the disability liason for medicine telling me that I should quit bc my disability will negatively affect patient care to being made to wait on the floor for 45 minutes before getting told I’d have to defer the year due to my illness and there was nothing they’d do to help me it hasn’t been great.

    Thanks for making this video, it’s been lonely going to uni and being the sick one all of a sudden. Everyone treats you like you’ve suddenly become a child because my immune system decides to fuck my life up.

    Things are getting better but they’re definitely still utter shit. If you’re at uni now If you can advocate for yourself please do!! And find a friend good at sending angry emails with you and you’ll figure it out eventually even if you should have to

  10. I went to a two year jr college that had a program for kids with learning disabilities. Schooling was good but it was a tiny school, 201 students, and a lot were locals so I didn’t fit in, being from a large city. The only kids from my city left to go home one weekend and I decided not to go. They wrecked n all died. I became a recluse. I felt up to it one night and I did go to a bonfire party n was raped. I quit shortly thereafter. I was suicidal. I moved out of my parents n got a job. Eventually going back to community college for criminal justice. I am Permian rly disabled now tho with sarcoidosis n fibromyalgia, small fiber neuropathy, ulcerative colitis, and degenerative disc disease. The past few days I’ve not gotten out of bed, this happens for weeks sometimes. Maybe 3 hours out of bed a day. I feel you.

  11. I hope this isn't one of those "I don't mean to be rude but…" questions, but had you not met Claudia just before you graduated, would you have left Brighton and moved back home, or perhaps to the big city?

  12. Me too. Well, the inflexible system that does equality of the "it's the same for everyone" variety rather than the "we adapt to measure your skill and not your ability" variety -_- yup, I'm still in the middle of that. Especially the rock and hard place of financing and work load. On a positive note, once I got a doctor who would write me the papers I needed I could at least access the bare minimum of accommodations.
    So bonus tip: Figure out what paperwork and other stuff you'll need and make sure your health care providers give you them. (Yes I'm the kind of person who bring a meeting agenda/checklist to my doctor's appointments)

  13. I am 28, we are on the brink of my EDS diagnoses, I have a muscle spasm disorder called Dystonia, T1D and gastroparesis.. We had no idea I had these issues. I struggled so much with school. I couldn't get the disability people to help me because the only think I had nailed down was t1d from when I got diagnosed at 16, NOW I've decided to go back.. I am hoping and praying I can do this. and I'm hoping and praying I will get the help I need this time. I flunked out of school 3 times because I couldn't make all the classes. I also thought I was dumb but I just have an Audio Processing disorder due to my neuro state… Now I'm going to try part time and do most of it online. my memories are the same.. snapshots. I never remember like full blown days. It just sucks.. I am so happy I could identify with this video. thank you for making this.

  14. I had a terrible experience at my college. The full story is entirely too long, but basically I had roommates every year that seemed to dislike me for various reasons, my professors at school expected me to dedicate all my time to each one of their classes (I was an art major and art professors can be exceptionally demanding), I worked at an animal shelter which was amazing, but always made me exhausted and sad, and during my senior year, I lived in a house with hoarders, I was broke, I was preparing my senior show (which is an insane task and the culmination of my entire college career), had to mentally fight off professors that said they didn't think I would graduate on time, and get ready to move to another state the day after I graduated. I was a depressed, angry, and sobbing mess graduation weekend and I hate looking back on it. I made great friends and had great accomplishments, but at the cost of my mental and physical well being (sleep deprivation, a diet consisting entirely of cheap fast food, depression, anxiety, and nightmares). I feel bad talking about it with my parents because my sister is having a great college experience and my parents are sad that I didn't, but I mean, what can you do? :S I'm just glad its over and I never have to go back to school again if I don't want to. Btw, I graduated with a BFA in Jewelry and Metalsmithing and work at a jewelry store, so life works itself out in the end!

  15. Sending all my love and support to young Jessica and anyone who can relate. not exactly the same but i have a fun combination of mental illnesses that sometimes make it impossible for me to be productive and do necessary things like getting out of bed, taking showers, studying, showing up for exams, leaving my room etc. and obviously this has made my university experience really bleak and had me questioning whether or not i’m “well enough “ to even be doing this. the feeling of being isolated and left behind is so so hard to come back from. i’m doing my 6th year of a four year degree and no longer know anyone who’s still on campus which isn’t doing wonders for my self belief. it’s all just very exhausting. the tips you shared here are so important and thank you for being you and putting out all this helpful content ♥️

  16. my time at university hit just when I started to get sick. as strange as it sounds, that timing was lucky: I only had a few symptoms to deal with at the time. I'd planned to major in English, but the first thing to go bad was my vision, so after my first semester I switched to film (it's a lot easier for me to watch a screen than to read a book). I put all my effort into the areas I could still do (class discussions, plot analysis) and didn't force myself to do what I couldn't (weekly readings) so I managed to pass. my grades weren't spectacular, but I got my degree.

    if I were to try and go back to school now, things would go much worse. I have a ton of other symptoms to contend with (my drs actually think I have POTS, though it isn't confirmed. they asked if I'd heard of it and thanks to your channel my answer was 'yes' — though I know your diagnosis has changed). I think a big part of getting a degree with a disability is timing

  17. Thank you so much for making this video Jessica <3
    I had a really rough time trying to make it through University, and I really admire the fact that you did in fact complete your degree even with all the hoops you had to throw your school experience through. I have an irritating box set of mental illnesses and undiagnosed physical issues that made my experience also very difficult and dark. I unfortunately did not manage to graduate because my depression and social anxiety especially made it impossible to get out of bed, let alone out the door and onto the bus to head to school.
    It really is worth knowing how much "leg work" is required to be disabled and in higher education… unless you can manage to be proactive, and uncompromising when it comes to asking for help it can be so overwhelming.
    Watching your channel has made me want to do something similar, especially in the vein of mental health advocacy because things like this are so so so important! Too many of us have had too many heartbreaking experiences trying to be better enough for even ourselvese… you make me want to be part of the positive side <3

  18. I‘m so sorry you had to go through this! It is absolutely inacceptable how the education system is not prepared to support disabled students !! This made me cry a lil 🙁

  19. Jessica thank you so much for sharing this story, I’m in second year uni and have been struggling with feeling isolated and alone, because there are a lot of things that are much harder/impossible for me compared to my friends due to my disability. I can’t tell you how amazing it is to hear that yes this happened to you, but you survived and you made an amazingly wonderful life for yourself. Thank you for your honesty, it means more than you’ll ever know

  20. College was the 3 most miserable years of my whole life. I'm sorry it was so hard for you too. I learned so much from it though and I know what I wouldn't do next time.

  21. I’m in university right now and it is hell. At this point taking care of my body is a full time job and sometimes I have a little energy to study but that’s kinda rare. It will take me 7 years to get my 4 year degree at the pace I’m going. There are some good parts though. There’s a club I’m part of (but I’m only well enough to attend half the time) for creative writing and people there are so amazing. I feel you on going because what the hell else am I going to do? I don’t know if I’ll ever be able to get a job though and use my degree. Maybe if I work from home? All I know is I’m doing school right now but that might change in the future

  22. I want to say thank you for this. This is exactly what I needed to hear. I am in the process of getting an EDS diagnosis. I do not word well and hope my feelings are properly conveyed.

  23. I have mental health problems rather than a physical disability but I found this video so moving and familiar. I didn't even know DSA covered people like me! I didn't know I could ask for help at university because my school and my family had been so awful about my illness. I never got to graduate and I'm still recovering five years later. I can't say I regret going because it was my dream university, my dream course, and I met lifelong friends. But it was hands down the most painful 5 years of my life because no-one knew how to help me and it made me feel so alone. The system is so broken and it makes me so angry to see how hostile evironments universities can be to disabled people! If you don't know how to navigate the system then it sets you up to fail but the only way you can learn the specific way your department and your university works is by trial and error. There has to be a simpler way!

  24. Thank you so much for sharing your story. I can't relate to being deaf or disabled. But I can understand being lonely so lonely that I'd be willing to do anything for friends. Thank you for Reminding me I'm not alone.

  25. I have had a similar situation in my life. I have hydrocephalus that wasn’t diagnosed until I was 20…I also have celiac disease and several other conditions. I strongly suspect that I have EDS.

  26. Undergrad was hard, but grad school was nearly impossible. I dont think I could even bring myself to do a video on those years or how shittt I was treated by teachers/etc. bc I was just in so much pain and didnt have a diagnosis so all I had was youtube. Grad school was just so, it was terrible. And then I had to give up my rent stabilized apartment in New York bc all our money went to medical bills. Ugh. I Thank you for your honesty and sharing your story.

  27. Wow, that whole video felt like a deep therapy session.. Incredible what you went through, also emotionally. Consider yourself hugged.

  28. So much of this is all too similar to my son's experience of University. He is Autistic and whilst the disability department have a policy for that the policy presumes autistic people will never make it to University. He struggles with dealing with admin and emails so he got about 50 emails from the disability department in the first month telling him how to access their support. He missed deadlines because he couldn't access the uni website but that's ok fill in the form on the website and we will take your problems into account. It took such a toll on him. Added to that, when he did try to socialise he got lost in a big city and was terrified. University is harder than anyone gives students credit for. For disabled students it is so much harder and no amount of policies and procedures followed by the Uni will help that.

  29. I hear you…I live with a Brain Injury…people seem to spend more time talking about what I can't do as opposed to what I can do…I love your sense of humour and the fact that you don't seem to give up….I'm happy I found your channel! 🇨🇦

  30. I will actually be going to university in summer and only by chance did i figure out that my university actually has an organisation for disabled students. No one told me about it, i just stumbled upon it by cruising around on their website.
    I don’t know yet how they will actually handle situations in practice but i am so thankfull because even getting through school before uni with a panic disorder that can set off at any trigger and a depression that can get really bad so you just can’t do your schoolwork sometimes and the ADD is hard. Especially because you tend to miss things, confuse dates or just cant simultaneously listen and write because thats to much input for your brain to handle.
    Sorry went on a bit of a tanget there. In short: I hope it get‘s better and they grant me acces to assistance.

  31. You are AMAZINGNESS carnate. I have a good idea of how you succeeded….brilliance had a little bit to do with it. You are such a soft femme — on the outside– and a feminist brainiac superhero on the inside. Claudia is very lucky to have you for a wife.

  32. I was recently diagnosed with POTS and I’ve felt very alone. I have wonderful family and friends, but they just don’t and can’t fully understand what I’m going through. It made me so happy to find your videos and read all the comments from people who are going through the same things that I am. Thank you

  33. Idk why I’m watching this at 5 am, because I know I’m gonna cry, i have very similar problems though not as extreme, and it’s just not fair that anyone should have to go through this kind of suffering. Man idk how long I’ve been in my bedroom.. oh I’m crying yep there it is.

  34. sometimes it hurts at just how much i can relate to your experiences…

    i'm starting my 7th year of what is a 3 year degree bc of my health, fighting multiple cases of medical malpractice (yay for pneumonia for nearly 2 years bc obviously "its all in your head"), of fighting the governmental agencies that help with finances bc they don't think you're disabled enough and if you are then you have to do a million things including sitting through people telling you you're a hypochondriac who's trying to steal money (????) when you're barely able to have a meal a day bc of no money and no help.

    but that all said, i'm on my last paper (technically half a paper since i did half of it before i had to withdraw on medical terms) and then i graduate!!! academia is what i want to do with my life (a professor and researcher) and i will damn well do this no matter how long or hard it is. next year i'm hoping to start masters since i'm taking the rest of the year off to recover after i finish this paper!!

    watching your videos makes me feel less alone, less broken, less stupid (people always ask me why i'm even bothering with uni, that i'm stupid to continue to try), but most of all you give me hope that i can do this and i can have a good future, so thank you x

  35. Other than the complications with course work due to my illnesses and disabilities, college was a wonderful experience for me. I didn’t ever have a support system. So I was very used to being helpless. It was harder in college because of the course load being so much. I went to school for music education. I had 10 classes and that was the minimum for my major to be full time. I had to be full time in order to get gov assistance. I played the violin and sang. So I also had rehearsals and I had to practice and I had homework like everyone else. I was in classes for a stupid amount of hours. And this made it difficult for me to be able to care for myself cause I needed a lot of rest.

    But I made lifelong friends. And once they realized I was disabled, they banned together and came up with a schedule to care for me. I NEVER ASKED THEN TO. They would hand me off to the next person. They would take turns spending the night in my dorm. My dorm manager and resident assistant were made aware of my needs and gave me an extra mattress so that my friends could sleep comfortably. This was aid I was getting from the kindness of people’s hearts. And it was something the school didn’t have to pay for. So they were happy to help. They would carry my backpack and push my wheelchair. They would bring me food if I couldn’t make it to the cafeteria. They made sure I was never alone unless I wanted to be. They stayed with me in the hospital when needed. They would help me shower and use the bathroom when necessary. And when I would have bad asthma days, they would stay up all night to make sure I was breathing. They threw parties for me with just our circle. They never allowed me to feel left out of the social circle. I was always invited out. And at times I would be worried about my limitations. But they always accommodated me. Once we went somewhere that wasn’t wheelchair accessible. Someone folded up my chair and carried it. While someone else put me on their back and tied an adult sized papoose do I could get to this party. Then they unfolded my wheelchair once we were inside. This trip took us like 30 mins. I’m not small. I’m over 200lbs. I was so worried a slightly embarrassed. And my friend shushed me and said “if you can’t go, none of us go. Don’t you dare feel embarrassed. If anyone dares bully you, I will take care of it. You’re not a burden. You light up our lives. Let us make yours easier.” And they constantly checked if I was comfortable. We got into a lot of shenanigans that night and I was super drunk. Lol

    But I was safe. And loved. And cared for. When I think of college, i forget sometimes about my disabilities. Especially because now, I’m much more functional. Some of my issues have been resolved. Others have gotten worse. But I understand my limits better and respect them. When I think back about college now, I only remember my friends and how loved I felt. We’re still friends. It’s been 10 years and some of us have families now. And we still check on each other like college was last year. They’re my family. And I will forever love them and cherish our adventures together.

  36. This was so eye opening. I’m sorry you had that horrible experience. In conclusion the world is terrible, Tory politicians are often thoughtless, but we all have to be proactive and positive in order to make change! You’re lovely❤️

  37. Its weird that I can relate with some parts of this experience, being trans at uni. Cause it was a strange time where I was supposed to trust people and explain myself even I was literally at the beginning of social transition Wich for some reason I thought was the ideal time to do, and being on be cause depression and I just… Stop to eat (teenage years was worst on the health aspects) and isolated, completely afraid of anyone… And let alone to explain why I have two names on my papers cause social names are just institucionalized exclusion. And before, letting a wonderful class to change courses and being mocked by every single person there cause the course director jut don't count whit the obvious out come/don't care (and I make a TERRIBLE choice by switching courses) and in fact most of my teachers laugh at my expencess….and simple used a encounter with my family to ignore the fact they know me and misgender me all along…
    Netless to say I quit college, wich, THANK GOD, was a public one.

  38. Thank you for making this video even though it was difficult for you. I’m currently in university and I started it healthy and free and excited, but few months later I got diagnosed with Lupus and Rheumatoid Arthritis. Since it’s still so new and I remember life before being sick, it’s difficult understanding what I can and can’t do and actually accepting that this is my life now and that I have to adjust my life to take care of my body. I’m still trying though. I’m trying to not let my illness control my life yet accepting that it is there and respecting it – right now it’s difficult finding the balance. Still, I’m very happy I found your channel, because it’s nice to see other people going through similar situations as well and knowing I’m not alone (-:

  39. I had a pretty rough college experience. I have Cerebral Palsy, Anxiety, Depression, Panic attacks, and a generally meek personality around authority figures because of how I was raised. I went to two different colleges the first one was my dream school it was small with a beautiful campus and outside of a small town at the very edge of my state but it was also two hours one way away from my support system and because I have/had a fiance and an emotional support animal as well as a bunch of other crud I couldn't live on campus or even get an apartment in time for school so I ended up living in a motel room on the opposite side of town from the college with my cat and fiance for a year of school down there and while I loved the classes and the people in them and everyone was so understanding on campus where I was living was horrible and the people running it were the vilest people I have ever run across. They would break into rooms, threaten us both mentally and physically, every month we were worried that they wouldn't give us our receipt for the room and then kick us out and we would have no where to go. I was scared to be alone in the room because if they came knocking I knew that something was going to go wrong and I was so scared all the time. When I get anxious or I go into a panic attack I have a habit of rubbing or scratching my knuckles I don't mean to do it it just happens and throughout that year my knuckles were raw and torn up I still have the scars. To top everything off however was that because of where I was located I couldn't call a bus to come pick me up and take me to class so I had to rely on this really nice older lady to take me in to class and she wasn't always able to meaning I would have to miss and my anxiety was worse. After a year of that I decided to move closer to home and moved into a larger city to go to school 15 minutes away from my fiance's family and an hour to 45 minutes away from mine. We were able to get a very nice apartment with really nice people who work in the office and such but the college was just horrid first off my financial aide didn't go through or transfer so I was constantly battling that and the campus was enormous with big classes as well as in the middle of a big city this ramped up my anxiety. I thought that I could do online classes but with a mix of not having a computer (It got broke when I fell a few weeks before classes started and not being able to get a new one because I didn't get my financial aid) and not being able to get the books (again no financial aid) I had to drop those classes which f***ed me out of even more aid. The class I did take that was on campus was just a waste as all it did was go over stuff I had learned in highschool and drained me to no end as taking the bus there took an hour because of all the stops and the class lasted 3 and half hours. I only lasted a semester there not being able to cope with everything. I still am scared to go back or continue schooling as I seem to have linked it with just pain, stress, and anxiety. It has left me exhausted and scarred both mentally and physically which makes me so sad because I truly love to learn.

  40. Watched this as I am planning to return to university. Despite having very different disabilities and a very different experience that led me to drop out of uni the first time there are some similarities with your story and the feelings that had me in floods of tears. Thank you for sharing your difficult experience.

    I hope being older, more aware of my disabilities and a bit more able to advocate for my needs will make a big difference. Very solid advice and a reminder of parts of my own experiences I need to plan to avoid repeating.

  41. Recent subscriber (Hello!) I was diagnosed with ADHD when I was 3. Primary school was hell because my parents did the responsible thing, which was to let teachers know that I follow a specific diet and had medication to take, etc. Biggest mistake ever, I was treated as the "stupid & slow kid" and it did not help that my dad passed on his bad eyesight either. So when I went to high school in a neighbouring district, I decided nobody would ever be told anything and they never knew anything. Only my best friend new and he was gay, so we had each other's back. We are still friends 15 years later. When I finally got into University, which was a fight on its own – I thought YES, I made it.

    Goodness, gracious was I wrong. I nearly failed all my 1st-semester courses and in 2nd semester I downright failed my exam in 1 of my 2 majoring subjects (Afrikaans & English Literature) – I had to do an oral exam in front of the whole faculty!

    Oh, maybe I should add I live in South Africa – disability services were available, but not really advertised if you were not "clearly" disabled. Also as ADHD had such a reputation (students fake their diagnosis to get medication and then sell it), and I did not ask for any help in high school, there was no "proof" that it was real. I thought it was for people who REALLY need it and not for people like me, who would get literally sick from exam anxiety and stress about my workload and doing everything last minute. By some miracle, I managed to get through 4 qualifications with fairly good marks and now work at the university within the department who, after my 1st year, gave me oral final exams because they felt I could handle it better – I had a few excellent professors and lecturers who I am very grateful to.

    Moral of my story is that I never joined a society, never went to campus events (the fact that I was a day student living 1 hour away was definitely not the main reason) and did not make many friends. If I had to do it over – I would have asked for help sooner. Seeing that I had a major meltdown during my masters (which I enjoyed doing on children's literature) and finally got the help I needed. I completely agree with all the points you make in this video – EVERY 1st YEAR should watch this, even the abled bodies. So that they are aware of their disabled classmates and friends and can lend a hand should they be inclined to help out.

    By the way, I now read and scribe for students at university and a local school, hoping to be the small helping hand I wish I asked for.

    Thanks for great video's – Laat dit goed gaan!

  42. Thank you so much for this video! I have a very close friend of mine who has similar issues to you, and is undergoing kind of the same things you described (which I won't give details on bc it's not my life), and this helps understanding better how they feel, and how to support them.

  43. I have Cerebral Palsy and I’m in my first year of uni right now and it’s really tough right now. Can relate to a lot of this already.

  44. Honestly the best things I ever did as a kid was learn sign language, make deaf friends, and take notes for them. Because I learned sign, I made great friends in high school and could communicate with them without needing the interpreter the whole time. Because we were friends, they asked me to make copies of my notes (which it feels different coming from a friend because they know you and like you and want you to succeed, ya know?) and it was so beneficial. I wanted to take good and thorough notes for them (because friendship) so I ended up getting better at note taking and therefore learned more. In particular, I was good at English so they were able to pass English and they were great at math so I was able to pass my math classes. It was awesome.

  45. This hit me incredibly hard. I’m currently in college, dealing with being undiagnosed and in the worst chronic pain ever. I am a part time student, because I have to be, and even then I’m scraping by. The memory loss is so hard. Days will go by and I won’t realize it. I look back at previous quarters and can only remember very few things. Thank you for sharing this, it makes me feel so much less alone. I was crying right along with you, as I live through something so similar. Feeling seen and understood is something seriously lacking in my life currently. While I have a good support system, they are all abled and that is absolutely helpful, but also I can’t get the same level of understanding from them as I can get from others with disabilities. Thank you. Thank you, thank you, thank you.

  46. I am in the US & I went to college straight out of high school. I moved 4 hours away from home (we don’t have any direct trains for things like that here), my first time away from home, less than 3 weeks after my 3rd surgery for stage IV Endometriosis with massive cysts that was extremely aggressive and had spread all throughout my pelvis, covering my reproductive organs, my bowels & intestines (almost required a resection & colostomy because of the depths of the lesions), my rectum, the ligaments in my pelvis, lesions on my kidney, and adhesions that had attached my right ovary to my rib cage, and bound all of my organs in places/ways where they were not meant to be, and it caused terrible IBS and other issues with functionality. The disease did respond to any drug therapies or the available treatment options for it (few & inadequate due to a complete non-existence of research into the disease). I was in agony daily, bleeding 26 of every 30 days, often unable to get out of bed, and had just started a new extremely harsh drug therapy (generally used to treat prostate cancer) that I would need to receive via injection from the school heath nurse. I also suffered from inexplicable migraines that caused the left side of my body to go numb & exhibit stroke like symptoms, that left me out of commission for weeks at a time. I also was regularly injured because I always was extremely flexible & had hyper mobile joints, & I would wake up with a dislocated shoulder or tear all the ligaments in my ankles by stepping on a pile of clothes on my floor on the way to the bathroom in the dark— a teacher once told the entire class in front of me that I wasn’t an accident waiting to happen, I had already happened— and struggled with the pain & exhaustion that all of the pain & struggles & issues that being ill (I was never considered disabled, even though I recognize now that I was/am…) but not having any validation that the way my body was, was not normal in any manner, shape, or form.
    I had spent the majority of my 4 high school years missing at least a day or two a week, having teachers get pissed off at me that I could still pass their class without being there regularly & then actively working to fail me, & struggling with all the physical AND emotional struggle caused by being trapped by all of this stuff I couldn’t even understand myself, much less explain to anyone else.

    But I was going to college. And not just to college, I was going AWAY to college. So I did.
    I had no support at the college. I didn’t have any assistance or modifications. Many of my classes were a 20 minute walk from my dorm (no public transit) , when most days I struggled to walk to my car in the bc parking lot. I had decided I would do the thing everyone back home had told me I would be- I’m from a very very tiny rural town & I was a super smart & driven educationally- and declared myself pre-med (what I really wanted was to be a librarian..). The staff at my college work hard to get rid of freshman declared pre-med students bc there are so many of them, so my freshman advisor allowed me to register for 17 hours of class work for my first semester (full time is 12……….). I had classes from 8am til almost 5:30pm 5 days a week and I couldn’t even manage that for the first 2 weeks before I stopped going to classes.

    I was in enormous physical pain because I was 4 hours from my doctors and health team and didn’t have access to the pain meds & stuff to manage then migraines & the endometriosis pain. I met an older guy who could buy me alcohol & I had him do so and I started drinking very heavily to dull the pain. I couldn’t get to my classes most days because my joints hurt so badly and because I had had dislocations in the first days I was there that I had ignored and pushed myself through to try and be successful, & thus started a snowball. I didn’t leave my room for weeks at a time unless I needed more booze, and there was no one to check on me when I was having flare ups or migraines or was so exhausted that a shower was the same as mountain climbing, and when I did make it to the shower, the energy necessary to get in exhausted me so much that often, it was only when my neighbors who I shared a bathroom with were pounding on the door threatening to get the Resident Advisor that I would just crawl out to my bed, not even bothering to dry or dress. The health nurse pretended she had no idea what I was talking about each month when I took my injection in to have it given.
    I didn’t even last a semester- I got so sick in November that my parents came and saw how I was “living” and packed me up and took me home. I lost my scholarships. It was devastating to me.
    I was so ashamed about it for a lot of years, but looking back now (I’m 36), I realize that I was failed by a system that didn’t offer me support- that I didn’t know that support was available. I was also failed in that I had serious chronic illnesses that were never going away that disabled me, but because I wasn’t missing a limb or in a wheelchair or deaf or blind, I wasn’t the right type of disabled to deserve the support (as limited as it sometimes is).
    I have no lasting friends from my time at college & few good memories.

    Your tips & suggestions are SO awesome & I wish I had had them when I was looking at college.

    (We’re currently thinking I have EDS, which is what led me to your videos..)

  47. First of, my disability is so slight i dont Even call it that most of the time. I'm fine 9/12 months of the year.

    But when in not, I'm not.

    If I get a tiny little cold, my lungs, airways and nose will fill to the brim with mucus for months after. It's hard to breath and I loose my breath just walking up one flight of stairs. My oxygen levels will fall, not so far its dangerous but so that I fell slightly dizzy and woozy most if the time and my heart is beating like crazy from just getting up from a chair.

    On top of that, my social anxiety prevents me from actually contacting anyone for help. I just want to blend into the crowd.

    So, never tried to get help ( got panic attacks just thinking about it). And now I'm redoing my last exam for the 4th time. Alone, because just mailing the advisors to get another chance tok me 6 months and countless hours of worry and panicking.

  48. I'm in my second year of university, and it has been…difficult, to say the least. I got kicked out of one group of friends for being 'too disabled' to understand all the extra social rules they added on top of regular societal norms, so I'm basically bullied by them. The people I had in my first halls were so ableist I had to move out midway through the year to a flat on the fourth floor of a building with no lift, just so I could actually leave my room without having a panic attack and actually eat properly. I'm in private renting at the moment with three people who also bully me because of my disability and my lack of acceptance towards the people who bully me and they've decided to remain friends with. Left a dance society after being isolated there, then because I got hit with severe mobility issues in January 2019 after a bad flu virus. The disability support my uni offers will only work if you insist that you need the help, and if you have 'acceptable' disabilities- and even then I've had notetakers not turn up meaning I've turned up to lectures for literally no reason.

    I don't regret it though, strangely. I love my course and my coursemates. I love the independence I didn't even know I was capable of, and the area I live in is utterly divine. I wonder if I should have chosen a different university, but since I didn't even think I'd get the grades for the Russell Group uni I'm in now, I doubt I would have gone for anything above that bracket. I've worked out what does and doesn't work for me- next year I'm moving into a 1 person flat about 5 mins away from a massive supermarket and a short bus ride away from main campus, and until then I visit my parents back home whenever I need a break. I'm somehow consistently getting the highest grades in my course, and despite the difficulties, I am happy. I made mistakes, but I survived them! 💜

  49. I forget how hard the first few years of university was for me. I do not remember a lot of it and my friends tend to fill in the blanks. It took me so damn long to get my 4 year degree it's embarrassing but I guess I eventually did it. I'm getting my masters now and at least everyone is struggling so I am less alone. It feels like you get extra life points for basic hygiene and eating something so I tend to blend right in with every other dark under eye circled person in the room.

  50. You are a wonderful human being and I just want to give you a hug! Thank you for educating us and being vulnerable with us! You are truly amazing and I just admire so much about you!!!! I would have absolutely been your friend! You are sweet and funny and intelligent and witty and I have always loved the 50's vintage style of dress, but not how women were treated then. I love that you take a fashion I love and put so much power behind that image. Never stop being you!!!! ❤❤❤❤❤❤❤

  51. I have to say for anyone watching this and worrying about going to university: you can contact the disabled student support people in advance and ask them about the support available. I'm disabled and a postgraduate so I'm on my third university; and though I've had a few issues along the way, I've had nothing even close to the problems Jessica had. They should give you a learning contract so that you don't have to do exactly what Jessica did if you can't attend class – for me, they just have to accept that I won't always be there, or I might be late, or leave early. My exams are in the afternoon and I get rest breaks, and if I don't think I did that well because my conditions flared up, I can just…do it again with no penalties. They're moving the rooms we'll be in next semester as I struggled to get between classes (one was only three weeks otherwise they'd have moved that for me as well), and I even mentioned offhand that there weren't many vegetarian options in the cafe so they've added more?? Honestly experiences vary university by university so don't be disheartened and think you can't go!

  52. This is so…real. I didn't get my diagnoses until after college and I look back and I wonder how I even survived. The memories I have are so dim and strange. It's a very odd thing to not be in possession of your own lived experiences.

  53. I'm honestly really shook right now. Until this video I thought I was the only person who experienced "did I do that or was it a thought i once had?"

  54. Watching your videos helps so much because for most of my life I've always had to keep quiet and not "complain" or "feel sorry for myself". So I push on, try to be normal, act normal – whatever that is. For the most part, my life has been a series of finding out that something new is wrong with me and doctors aren't exactly sure which of my disabilities or illnesses cause which symptoms. On top of that, I don't understand why I'll just manage to get one thing under control and then another thing goes wrong. And then once I've managed to get that under control, the previous thing goes wrong again. And then there is the constant anxiety in my head – do I speak up and get told off; or do I keep quiet until it's too late? And then there are my studies… The average person takes less than 6 months to complete a standard TEFL course. I started last year March, and I'm only half way. Some days I love it, and other days I can barely find the energy to lift the cap off of the highlighter. I'm so afraid I will be trapped forever being a burden on my family. I didn't make it through Cosmetology at Varsity (I was too slow and too weak to lift things – Arthrogryposis, among other things) and now I'm afraid that I won't make it through to become a linguist, which is my dream. I don't know how to stay motivated when some days (in fact right now) I can barely breathe and no one seems to know why.

    Jessica, you're amazing! You help people be able to come to terms with themselves and to still remember they have the right to enjoy their lives too.

  55. Eyyyyy I was a note taker in college! I can’t remember how it came to be but it wasn’t paid. I think somehow someone found out I had really good handwriting (in my day everyone still took notes by hand even though laptops were already widespread) and really good notes (always attended class, was prepared so I knew what was going on, etc) and approached me? Maybe I volunteered, since I can’t see how they would have known the quality of my handwritten notes. It was over 15 years ago, so the details are fuzzy. I do remember the sign language interpreter and the deaf student in the class and I assumed the notes were for him but they never introduced us. I am glad if I helped in any small part to enable a disabled student to get a college degree. It also motivated me to always pay attention in class and be a good student so it was a win-win really.

  56. Every video of yours I watch makes me adore you more. I had pmdd throughout college and that means half my month I am an outgoing extrovert and half the month I'm anxious and depressed and angry. Oof. University was tough.

  57. I'm in Grad school and struggling with this right now, they are happy to support my learning disability but not my illness. Disability services states my issues are "beyond what they can assist with" their only suggestion is I take a medical leave or drop the program, they do not seem to have a lot of interest in assisting me through the program. I don't want to drop out of my masters but I'm feeling very lost, anyway thank you for this video and all your others. You are amazingly strong, you deal with way more than i do and I'm so sorry that you didn't get the support you need.

  58. Sooo relatable! My universities disabilities person is so unnecessary. I have great Professors, but that person keeps telling me I just need to live with the inaccessibility and exclusion. Like wait… You have one job… and you can't even do that???

  59. I don’t really understand British university…but, is it possible to take online classes or do an online degree like we can in America? (Forgive me if this wasn’t possible then…I don’t know what years you went to university.)

  60. ah, I feel so overwhelmed hearing your story- for I also have a chronic illness, depression and anxiety, and thought I could do full-time for my very first university semester and then I had a huge burn out– then made the same mistake this second semester thinking I could handle more than just 2 classes and now burnt out again. I want to major in Psychology, but ironically my own mental illness makes me doubtful that I could handle the requirements, whether the financial aid will still cover it with how slow I'd be, that I could even help anybody else with what I could learn- if I can learn at all… Your story and the stories I'm seeing in these comments certainly help me feel less ashamed and alone though <3 Thank you for being you, Jessica

  61. I'm in my second year at university and it has been a whirlwind. I suffer from severe depression & anxiety as well as ptsd, eds, and some unknown physical ailments. It can be really hard to stay motivated enough to go to class and I constantly find myself forgetting to the basic things that I need to do to stay healthy. I also tend to overcompensate for my illnesses and end up burning out very quickly, which is incredibly frustrating. I try to remind myself though, that I love what I am studying (medical anthropology) and I am participating in some amazing opportunities (such as the field school I'm attending this summer). I really appreciate you sharing your experience with us, it is encouraging to see someone get through university while struggling and although I'm really sorry your experience was so bad, I'm glad to see that you're in a much happier place now and that makes me feel like I can get there too.

  62. You are a very elegant woman. I admire your strength, courage and transparency. Thank you…Loving your channel~ yes! I subscribed!!!

  63. this video brings up a lot of painful memories of having critical depression in uni. not quite the same experience, but also similar in many ways. (i'm still in uni though, and have to go back in a couple of days, which kind of makes me want to cry at all hours of the day but sometimes you just have to do what you have to do.)

    i think one of the most painful parts is looking back and trying to figure out what i could have done differently. what decisions could i have made that would have made the entire thing less traumatic. and i keep going in circles, because i can't find any. a lot of the struggles i went through were not just because i was sick but the decisions and thought processes that i had because i was sick, because that's what mental illness does. i know that the whole time i was doing my best, and there is nothing i could have done better because of where my head was. it's a special kind of hurt to reflect and come to the conclusion that things you suffered were inevitable, because you were incapable of doing better at the time, i think.

    i hope that one day i can share my experience like you to help someone else. maybe then, i'll be able to look back and find something that someone like me could learn from.

  64. I got halfway through a law degree. And then my spine gave up on me even further.

    That was almost four years ago (and I was a mature student to begin with). I still only have half a law degree.

    And I’m currently bedbound at the moment. Which sucks.

  65. Oh Jessica.. no one deserves what you went through during university. I wish it was easier for people with disabilities to receive the help and care that they need. I recently had a terrible experience at the ER because they wouldn’t take me seriously because I’m too young for these issues to be serious so we’re not going to run any tests.. Nope it doesn’t matter that you’re diagnosed with lupus and you’re having alarming symptoms. You’re young so you’re probably fine so here pay us your $150 Copay and go back home without having had received any treatment. And guess what?? My symptoms got worse and not better and I had to go back to the ER two days later and pay another $150 copay. Luckily I went to a different hospital where the staff was concerned about me and they ran tests. If I wouldn’t have gone back to the ER I would’ve have continued to get sicker and sicker until I was considered an exciting emergency case for those jaded ER doctors.. you would think that if they could treat an emergency while it’s moderate they would prefer that over waiting for the emergency to become severe. And I mean it was already an emergency lol just I wasn’t actively dying yet. Ya know I was trying to avoid that

  66. You reminded me that I took notes for someone with a disability in first semester of university! It was anonymous so I never knew for whom I was taking the notes. I just had to submit them to the university, and I would get paid in vouchers for the uni bookstore.

  67. I just want to give you a big warm hug and hold you. So you know that there are people here who care about you. I'm sorry to hear how bad your university time was. But you're strong and you got through it. And you're strong enough to now relive to help others maybe heading the same way.

  68. I also made a decision to go to Sussex uni based largely on my disability… and ended up dropping out as I hated my course and my health collapsed anyway, even with all the excellent healthcare and being close to my parents. I relate so deeply to the pain you express in forgetting to eat, forgetting to take pills… I also lost nearly 3 stone, and I only survived at all because my best friend there who I made early on (the only person to not just pass me notes from missed lectures, but record and livestream them to my room so I could attend on days I couldn't walk <3 ) basically spoon fed me through the bad days.

    I'm hoping to go back in a couple of years to do a different course at a different university, Part time, while ideally living with my partner in the same town as the university so I don't need to stress about not having support. <3

    I have so much empathy for you right now. <3

    Solidarity. <3

  69. You are amazing! I now know why youtube recomended your channel to me,i had to take a year off of uni because of depression due to my bipolar disorder and endometriosis(had to have surgery for that! And it still hurts like a bitch!) But now i am back in, studying medicine and doing great! Thank you so much for sharing your experience

  70. oh man i cried so much for this video. I am sorry you struggled so much, but I am so glad you grew into such an amazing person despite it, and you've worked to achieve your dreams. you're absolutely incredible.

  71. I have severe depression and am constantly exhausted and a lot of days I can’t get out of bed and most people I knew at uni think I’m shit and skiving all the time, and I feel alone and I’m supposed to be telling people how they can help me but I don’t know how they can, I wanted it to be fun but I’m just lonely sad and struggling to get my work done because I keep missing uni or having no energy. The doctors say it’s a sleep disorder and they can’t do anything and I have to sort it out myself so I don’t really know what to do and it seems like no one can help

  72. Thank you Jessica for having the courage to talk about your issues, you are providing a safe space for people everywhere. I always visit your videos if I feel a need for a safe space. Take care.

  73. I'm at university in the US right now, miles and miles and miles from home. I have fibromyalgia that was just diagnosed three months ago, and I'm in my third year. I've had to miss classes and be careful with which and how many clubs I attend. I've had to let my friends and classmates down because of fatigue and pain. I've never attended a real college party that wasn't a trusted friend's birthday party (which was only twice) cause I can never be sure if there are places to sit. I've had to give up on the possibility of doing a senior thesis because it's just too much. I am still fighting to get a shower chair put into my hall. I'm an environmental engineering major, and when classes have required me to go on a hike or explore the forest or go on some other field trip, I am exhausted for the rest of the day and have to force myself to go to my classes. I just turned 21 recently, but I'm now on medicine which means I should mostly avoid drinking so I can't really go to bars with my friends. I get questions again and again from people about my cane and I am tired of the explaining again and again and again. I don't even have accommodations because I am scared to ask for them because my doctor seems really optimistic about me and I'm not sure he would give me the ones I really need.
    But despite all of this, I am still happy. I have friends and a support system and I love my major. I am going to graduate and go to grad school and not fail any classes. That doesn't mean it isn't really really hard, but I'm dealing with it as best as I can. At least I hope I am.

  74. I failed uni the first time around due to mental health reasons that weren't being addressed, and I have to start again at 28 due to the hoops I had to jump through to get back in.

    I can at least physically pass as younger, because I feel so old and behind compared to everyone else

  75. I'm too tired to type out a detailed description of my one semester of University, but long story short: my best friend/roommate turned out to not be a very good friend, small town Wisconsin is a very isolated and lonely place if you don't have a car, I overestimated myself and took a bunch of difficult classes and then gave up on all but art history because I actually enjoyed that class, and my dorm room felt like a tiny prison cell.

  76. I'm a huge fan of Jessica and have a disability myself
    Can you please help me purchase a wheelchair accessible van?
    https://www.gofundme.com/f/wheelchair-accessible-van-for-university-student?utm_source=customer&utm_medium=copy_link-tip&utm_campaign=p_cp+share-sheet

  77. Hi Jessica, I don’t usually comment on videos but wanted to a huge thank you. I watched this before an open day at Falmouth University for their Animation course and was super nervous about potentially studying there as it was local to me and I didn’t want to be seen as ‘weak’ for studying locally. I didn’t want my disability and health to hinder me.The course lecturer who interviewed me was amazing and I felt so supported on the interview and I had you in the back of my mind the whole time. It turned out to be amazing and I got offered an unconditional and was so happy to accept it. I wouldn’t have if it wasn’t for you – so thank you!

  78. I really struggled with my learning disability and chronic illness in high school but I REALLY wanted to go far away for college. Because all my friends were and my big sister had. My parents told me no and for a while I really, genuinely resented them for that. I was so mad and so depressed over it. 3 years later I'm incredibly glad they did. If I wanted to move away now, I could probably do it. But freshman year? I almost lost my scholarship I was so overwhelmed. And to be fair, they did still let me move out. My college is 45 minutes away from home by car, and an hour by train. Which has been SO helpful. When I was sick in bed, in pain, failing 2 classes freshman year, I called my mom and she could literally be there that evening after work to help me. I go home just for the weekends when I need a break and I can still see all my previous doctors.

  79. I went to a year and a half of college before my disability caused me to have massive seizures and I ended up breaking my back 3 separate times and was wheelchair bound. My college (I live in the Southern part of USA) wasn’t wheelchair accessible…so I ended up dropping out. I regret it every day but I can’t afford to go back.

  80. I relate so much to this. I kept showing up as a freshman credit-wise and no one could understand why invisibly ill yet ambitious me wasn't able to meet attendance requirements or complete all the assignments. I only ate drive-through food (I can't eat tv dinners bc gastro reasons)bc the pain of lifting ceramic plates, standing in line, and the anxiety of going to the food hall was too much. Had a support system full of ppl who drifted away bc I didnt get better/couldnt advance w them. I finally transferred and I'm currently commuting from home and taking less classes with no income, but you help me to have hope for the future.

  81. Uni is horrible. I tried the first year like you. And that resulted in more than 4 years fucked up health and trying to get things back on track. Fuck this shit.
    Same story minus people to interact with, because I was just always so sad and exhausted and couldn't even speak most of the time without starting to cry.
    Doing my masters just because fuck you I'll tell everyone how horrible and unhelpful everyone was and I already spend so much time fighting windmills, what's some more?

  82. I'm an American college student with Spastic Diplegia, which is a type of Cerebral Palsy. I'm currently in my third year and I often feel like "the disabled one" on my campus. I feel really alone and sometimes I don't leave my room to eat because the walk is so far and I get tired. I only knew one other person with a disability, and she moved back home. College is demanding in general and then adding all these extra layers of difficulty really makes me question myself as a person and especially as a person able to be educated and live a fulfilling life. I don't really need any extra help and I never ask for it, although I feel like I've been raised to be the type of person who pushes through things. But sometimes when I'm walking back from class, I just want to lay down in the middle of the sidewalk and forget all of this. I want to believe things will get better, but I honestly don't know if they will. I've more recently met some really great people, and that's helped a lot. Things are still difficult, and I think they always will be. I also have depression, which makes the desire to give up that much stronger. This year has been really hard and I sort of feel like I shouldn't complain, right, because things aren't that bad, but they feel bad to me.

  83. Oh goodness I had experienced almost all of this with my community college, I felt like a failure and a burden thank you so much for this video

  84. I’m currently in my second year at uni at 26. This was my third attempt at getting to uni. I have dyspraxia, ADHD, anxiety, possible autism and just very poor executive functioning despite being academically inclined. Flunked my GCSEs, failed my A-levels, failed a level 3 BTEC and scraped by on an access course but I finally got to uni and for the first time received any support because often in our education system, if you’re the “bright precocious girl” type they won’t give you support. My uni is good and helped me apply for DSA, which in itself was a bit of a nightmare process when you were diagnosed pre-16 or weren’t diagnosed at all. I’ll never take for granted being able to have automatic extensions on assignments when it takes me several days to write four words sometimes. I am determined to finish my degree in social work and use my experiences to help others access the right support.

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