Going to College with a Chronic Illness/Disability

Advice of what to do when looking at colleges... you know, all the stuff I didn't do.
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[@elenamariazaitzeva]

Your video helped a lot! I have Crohn's and am going to college in August. It makes me more optimistic knowing you've gotten an education all while dealing with this disease

[@badluckbro661]

I just got redults i got ibd, ulcerative colitus,diverticulitus i dont want to work any more

[@TwitchyMoth]

"wheelchair bound" urghh. We aren't bound to a wheelchair. We would be bed bound without the chair.

[@timtitus6226]

High school with UC was a game of Russian roulette every time i was flaring. There were more than a few times i was certain and accepted that i was going to....erupt, in class. The flares got to the point where i missed 2mos straight of school and had to get the ileostomy. Thanks for sharing your story, i hope your doing well

[@lalaithan]

Man, if I had IBD at my HS, I would've been in so much trouble because I would've just ran. :D

[@adelaadeela3200]

Thank you for the video! I really enjoy watching videos about going to colleges/universities with a chronic illness, I have dysautonomia and it took me like 2 years to tell my professors and ask them for accommodations. They've been super nice and helpful since, I should have done it earlier.

[@jessicaborgogni9595]

Omg this hair color looks sooooo good on you!!!

[@Antonia08]

I'm 13 and I have Lupus. I'd be so glad if there was something like the 504 plan in my school. I'm living in Germany and I feel like people don't even know there are teenagers with chronic illnesses or they just don't think about it. I mean the teachers are supporting me and all but they don't help me with learning the things I've missed in school. I have to do it all by myself. And if my grades aren't good enough at the end of the year or if I don't have enough grades, I will have to repeat the grade. I just wish people were aware of chronic illness.

[@MrVladteples]

you handled college so much better than I did

[@kkmmrew]

i am so thankful to you for your videos (this one especially) i graduated high school in 2015 (barely) i was so sick my entire life with ibd but no one new exactly what was wrong. right after graduation i got super sick for 6 months before they finally figured out i have hirschprungs disease and gave my an illeostomy, so my gap year after high school has mostly been me sick and recovering. i am hoping to go to college next year for education. i found your videos a few moths ago and watched every one, they are the main reason why i am so proud now to be an ostomate. sorry for rambling but i wanted to say thank you from the bottom of my heart for all that you have done for me without even noticing it.

[@LetsTalkIBD]

Thank you for your nice message! Remember to take things at your own pace! Give yourself time to recover and you will do fantastic in college ! Ostomies are AWESOME!

[@pencroftonum]

I remember, when I had flare ups, I had to just lay in bed for several weeks, missing all the classes, I was so weak... all I did, just basically ate a bowl of potatoes a day and ran to the bathroom, probably spent 20 hours a day just laying in bed, it was a torture. After every flare up I just brought papers from the hospital to my school, and it was fine with the teachers, but I could barely catch up with the studies to be able to pass exams.

[@georgiasoaps]

I'm 18 and I have fibromyalgia, which makes it very painful to walk at times, and I just started college about a month ago. I'm going to my dream school, but it is a HUGE campus and even if I take the bus I still need to walk quite a bit. My dorm is on the second floor and there are no elevators. I also have to go up 6 flights of stairs to get to the dining hall, so sometimes I just don't eat. I'm really struggling and I don't know if I can make it, especially since I plan to go to grad school later and become a vet. Does anyone have any advice/motivation for my predicament?

[@carolinerudd2053]

Hey Georgia! I'm in college too, a sophomore actually, struggling with Chronic Lyme, Celiac, POTS, and fibromyalgia (other diagnoses are on the table as I recently had a positive ANA, but my doctors are still working at figuring out what exactly that is). Between the fainting feeling I get from my POTS, as well as the pain from fibro, I struggle with the same walking to class issue. Similar to Maggie Baldwin, I try not to use my health as an excuse, and it took me months to finally gain up the courage to ask my pain clinic doctor for a handicapped pass. I'm sure you, too, have a doctor you see about once a month, so I highly recommend asking for one if you happen to have a car on campus, as nearly every building should have handicap parking near the entrances/exits. I didn't have too terrible of a time my fall semester with eating, but I had a massive flare my spring semester which required me to move home and take my classes online. I then changed my diet to a vegan diet, and now cook every meal myself. Though this probably wouldn't be too practical if your dorm doesn't have a kitchen, I think your best bet would be to stock up when you do go to the cafeteria, maybe grab lots of fruit, pack a salad for later, and bring it back to your dorm. That way you don't have to make the trek there for every meal. The one thing that really saved me was my friends. Explain your situation, and make sure they're familiar with your diagnosis, and how it limits you. If they're your friends, they should have no problem making a trip for you a couple times a week to bring you food back so that you don't have to overexert yourself. Food is so vital when your body is hurting, it will keep your energy level up despite fatigue, and might be the one thing that keeps you from staying in all day. For instance, I find that eating 2-3 bananas a day results in less pain that day than one in which I have no bananas (for some reason bananas are really good for fibro pain). I'm not too sure what I can say about a school without elevators. It took me until this semester to apply for disability to receive accommodations by my professors, see if maybe you can work with a nutritionist/dietitian on campus to deliver meals (I'm almost certain every school has to have this), and make sure you have the accommodations you need before you get really sick, and it's too late. I'm not sure where you go, but there are bound to be other places on campus where you can go to eat, or locations around campus that take your school's food dollars/meal swipes. I have found between the days my sleep schedule is completely messed up, my pain is at its worst, and days I have to make travels home for appointments, that an all-online course schedule works best for me at the moment. I'm able to get the necessary credits, and I don't have to worry about falling ill suddenly and missing class, because my class is simply wherever I go. You may find this to be beneficial too when you go to sign up for next semester's classes (Tip: make sure one of your accommodations is early registration so that you can have a better chance at getting a spot in an online class, or choosing a class that is in a relatively close building to your dorm.) Don't let your illness stop you from what you want to do. You can easily still become a vet with this disease, it just might take you a bit longer to get through your schooling, or your schooling might have to be fully online. Always put your body and your health first, but don't let it take such a priority that you give up on your goals. You can definitely do what you love in a way that accommodates your limitations. Remember, though, as a freshman, everyone goes in with goals of being one thing, and then likely graduates with an entirely different path. I, for instance, went in as pre-med, and still feel very passionately about medicine, but I have since changed my career path to one which involves English, and is not only something which I'm passionate about, and excel at, but also something which can easily work around my health restrictions. If you feel confident about being a vet, though, do it. Whether it takes you 3, 4, or 5 years to get a degree, you can get it, just make sure you're not doubting your ability and intelligence just because fibro is inconvenient at the current moment. I hope that makes sense, and I hope this has helped some. If you want to talk any more, ask any questions, or whatever the case may be, feel free to reply saying so, & we can exchange emails!! Best of luck!

[@cheyenneperkins8918]

Georgia Bence talk to the college! They might have special dorms for Disabilities

[@guineagirl246]

I know this is an older video but Im a college freshmen and I have a spinal cord disorder and I cannot stress enough that communicating with your teachers is VITAL. Professors want to help you, and they respect that you are working hard even while sick. I do go to a private school and I havnt had any issues getting accommodations

[@petina_13]

Thank you for this video! :) I have many chronic illnesses and I'm going to college soon.

[@LetsTalkIBD]

I'm sure you'll do great in college! :)

[@petina_13]

Hopefully! Thank you :)

[@baileymclemore6065]

I know this is an old video but I figured I'd give this a try. I have a chronic digestive issue, but none of my medical tests have been conclusive, therefore I dont have a diagnosis. At my university, you can only get disability services if you have a diagnosis. I went through all of undergrad really struggling and having a lot of attendance problems. I'm about to start grad school at the same place and still have no diagnosis. I have to work in a clinic, so I can't be absent. I have no idea what to do in this case. Disability services basically told me "no diagnosis, too bad". Some of my teachers were understanding in the past, but many kind of made it seem like they thought I was just buying myself fake sick days. Its just very frustrating.

[@lalaithan]

I'm sure if you lay out what's up to your professors/advisors, they will understand and create their own plan with you for success. Faculty USUALLY get that sometimes the rules are stupid and are okay to bend. You have to accept that it is perfectly okay to be sick and need help or your stress will bring you down (I know from bad experience).

[@phillipcrain3545]

2 BIG THINGS! 504 plans do not apply to the post-secondary level. Accommodations do exist at the post-secondary level but they are handled differently. While section 504 of the Rehabilitation Act does apply to colleges/universities it's a different subset of act that doesn't include accommodations. Accommodations at the post-secondary level are usually handled through the school's Disability Services (or other similar name) office and requires paperwork proving both disability and the need for reasonable accommodations. The student is then responsible for making your professors aware of your accommodations and requesting that they meet them. From there the professor will usually meet them exactly or work out a suitable plan that works as well. It is ultimately the student's responsibility to ensure that they receive their accommodations even if it means reminding a professor periodically. Secondly, wheelchair bound is generally considered an offensive phrase. The idea being that someone is not physically bound to their chair and ultimately the chair provides the user with mobility and freedom that they would otherwise lack. Use wheelchair user or person that uses a wheelchair instead.

[@anneharrison1849]

thanks for that 2nd one, I hear it a lot on US videos etc. so I try and correct gently. My wheelchair is a tool not a prison.

[@stillsurviving5864]

I’m glad you mentioned this!! I was totally unaware that the term “wheelchair-bound” was offensive! I have all sorts of chronic conditions and have needed a wheelchair for months at a time. I also work with kids with special needs at my school, and many of them are unable to even take a few steps without their chair. It’s so weird to think that I didn’t know that! I will refrain from saying “wheelchair-bound” again. Thank you so much.

[@viewfromachair2211]

StillSurviving I’m so happy you have thanked me. You have no reason to feel bad, it is a standard American way of phrasing things (in the UK I hear it but not as much) a lot of disabled people use it to refer to themselves not realising it might offend others or possibly even have a slightly negative subconscious nudge in the way they think about themselves.

[@anneharrison1849]

I got through my undergrad without knowing that all my problems were due to an underlying disability. I've taken a lot of time out of education since then but I have studied part time at a couple of different places and they have been great with disability accomodations. Now I want to go back and do a masters at a prestigious university, I need to do it part time as there is no amount of accomodations they can make that would allow me to do it full time. It's such a fight, I get the impression some people thing they are exempt from equality laws. Thankfully I do have people on my side, we've just got to hope the degree committee will accept a part time student as if they decide I gain an advantage from part time study they can decide it's not a valid path to the MPhil degree.

[@devynmackenzie9570]

Hello! 🙋 I recently found your channel and really enjoy & benefit from your videos! I saw that you are a nurse; how do you deal with working a full time job and having a chronic illness? I am still fairly new to the life of GI chronic illness and begin a new job next week which is 9:30-6:30 Monday through Friday, with a 45 minute commute.. I need the job because of insurance but i am really anxious right now about if my body can handle it! What is your advice ?

[@kahhhching]

I thought 504 plans and IEPs are only for elementary-high school...? There’s always disability services but I’ve never heard of 504s carrying on through college.

[@nessbailey7931]

IEPs can be carried through college, I am in high school and have an IEP. It depends on the student though, by the time they reach high school or college they may not need the IEP any more.

[@differentisbeauty4995]

I don't write in front people and I have 4 learning disabilities I am terrified to right in front of people i'll try to remember stuff my memory is so bad in such a way that I cannot remember how to respond to people when they ask me things I have dyscalculia, dyslexia, dysgraphia attention deficit hyperactivity disorder and this things make my life hell I can't finish school because of the fear and anxiety I get from school I'm going to school now but on the exams days I feel so stupid and so dumb not remembering anything or everything sounds great answer is terrifying because of the anxiety that I have I end up choosing things that I didn't want to choose them And I pray to God that I pass but sometime it doesn't come that way and it's so painful to know that I am really trying really really hard to study but is not reflecting on my grade is discouraging, anybody help me to to get through this? how do I get through the fear and which ways are best ways to study for someone like me ?

[@reginaldbastion-van-housen9825]

how did you handle the weight loss? i am in highschool suffering with crohns i am struggling with weight loss and i look like a skeleton with me being 6'2 at 115 lbs

[@LetsTalkIBD]

It has been a difficult journey - it is sometimes very difficult to gain weight and when you try, it makes you even sicker. I had to essentially learn to ignore my weight and the number, and eat what made me feel good. It's hard to constantly hear "You should eat more", and I am still learning how to handle this

[@solarmoth4628]

It's the HSPA?

[@cupstudios3788]

You got me at 1:20

[@vnmsenior]

Look up Dr. Cass Ingram, watch all of his videos and read his books. Thanks for sharing

[@adelaadeela3200]

Thank you for the video! I really enjoy watching videos about going to colleges/universities with a chronic illness, I have dysautonomia and it took me like 2 years to tell my professors and ask them for accommodations. They've been super nice and helpful since, I should have done it earlier.