Getting Diagnosed in College

Discussion in 'Fibromyalgia Main Forum' started by merry_melody, Sep 2, 2008.

  1. merry_melody

    merry_melody New Member

    I'm 20 years old and trying to get the doctors to listen. I feel like they think I'm crazy. My body doesn't work like everyone elses and offers no reason why. Hopefully this month I'll be seeing a rhem-whatever doctor to find out if it's FM. Does anyone have advise about getting the diagnosis? Staying in college while working and having FM?
    [This Message was Edited on 09/02/2008]
  2. soleil16

    soleil16 New Member

    I was diagnosed while in college as well (just 4 years ago). My doctors thought I was insane when I showed them my list of symptoms and ways this affects my life. I think I did at least 10 pregnancy tests a year at the school's health center for three of my years in college (even though I told them I was NOT sexually active) just to satisfy them because they clearly thought I was lying.

    What helped was when I found a rheumatologist and had my parents, fiance or a friend go in with me to appointments. I'm very independent and didn't really need anyone to take care of it for me, but having them there, reminding me of everything and just really backing me up, made a total difference. Doctors would tell me to my face to get a psych evaluation because I was a young, depressed college girl... but with someone else in the room insisting that you're really struggling and just trying to get better... it somehow earned me a lot more respect. I like involving my family in the whole thing anyway so they can ask any questions that come to mind.

    As far as college and work... you will have to decide that for yourself. I could not have possible worked and really don't even remember a lot of my education because of fibrofog the entire time. But I would suggest that focusing on feeling better may be worth a lot more than stressing over school and work, since I've found both just cause me to crash at some point unless I get a really good break. If you do really want to stay in school, consider talking to your professors about your limitations. I found that all of mine were extremely sympathetic and much more likely to understand if I needed an extension or missed class.

    Good luck, I know how tough it can be. You may have to adapt and live a different lifestyle than the usual college student, but I'm proof that it can be done!
    [This Message was Edited on 09/02/2008]
  3. ellikers

    ellikers New Member

    I became sick at age 22 and I was in college at the time, so I know a little about what you are going through. You are NOT alone!

    I agree with soleil that it can help if you bring a trusted person with you to appointments, even if just for moral support. I didn't really do that, but I think it might have helped me get taken seriously earlier than I did.

    I went through a year of being patted on the head and dismissed for all my viral-like and massive fatigue symptoms (I had CFIDS). I went through a lot of obnoxious doctors at both my college and out in the city in which I live. They told me I was just getting the flu a lot (and offered no explanation as to why that was suddenly happening to me)!

    I ended up taking time off of school (and minimal hours at my job) because I was too sick and nonfunctional to keep up with my classes. Of course that's a completely personal choice like others have already mentioned.

    I actually had a lot more success seeing Nurse Practitioners than doctors (that is the type of medical person that actually ended up helping me and diagnosing me!) so that might be something you'd want to try.

    Just know that while you might feel alone in this, and like the only 20 something who can't do what "average" 20 somethings do, you are NOT alone! Many have been through what you're going through and because you are young it tends to help you get better faster (in my experience and those of my friends).

    Hang in there! Above all, FIGHT for your health- it shouldn't be that way, but unfortunately we pretty much have to because no one else is fighting for our health. You might meet doctors that are disrespectful, dismissive and utterly unhelpful ... DUMP THEM and trudge on the best you can to find someone that will truly listen to you, honor you and HELP you. It's worth it! I promise! I wish I had fought earlier than I had, and I think one of the main reasons I'm healthy and recovered today is that I fought as hard as I did and got diagnosed a year after getting sick.

    Take good care and keep us posted!
  4. merry_melody

    merry_melody New Member

    It's been a really frustrating year of doctor visits. I've been pretty successful finding doctors that think I'm crazy or looking for attention. I go in again on Friday to get a referal to a FM-friendly reum, whose name I got from a FM/CFS support group leader. Fingers crossed and prayers appreciated!

    The hardest part right now is knowing that I'm doing too much, but not feeling like it's okay to take a step back. My scholarship is tied to how many hours I take, and my living situation to my job (i work for the university and get free room and board for working.)my friends have been amazing, but there are times and things they just don't understand. my boss knows i'm having some problems, but he either babies people or piles on work. i hate being babied, so i let him pile on the work. not having a diagnosis on my side makes working with my professors hard to deal with when i miss classes.

    Thank you guys so much for you words of encouragement and wisdom. They are greatly appreciated. Keep em coming!
  5. ellikers

    ellikers New Member

    Do you have a disability services office at your university?

    Even if you do not yet have a diagnosis, they can be a BIG SUPPORT (they were at my school at least). I took time off of school because of my illness because all my symptoms were severely limiting my ability to do any work, but I didn't have a diagnosis yet. People in that office helped me withdraw from school, and I bet the same people could help you work out something for your job and living situation. People are disable by TONS of different things, and it's the university's job to provide services to students (that's you!). So I strongly encourage checking that option out.

    Hang in there! I was lucky that I was out of student housing when I got sick and was able to work a small amount while sick (and not going to school) and depend on my parents a lot. It might be worth it to investigate taking out loans to cover your living expenses while you get well ... something else the disability services office should be able to help you out with.

    And keep remembering doctors who say stupid and unhelpful and unknowledgeable things are STUPID! YOU ARE RIGHT, you are dealing with a lot and finding the right medical ally is key. Good luck with your new rheumy! I'm sending positive vibes your way. :)

    Keep us posted! :)
  6. victoria

    victoria New Member

    S/he can write a letter on your behalf for you to take to your school's disabilities coordinator. My son has lyme, tried to take a basic course in math, and because of his doctor's letter, was allowed to take tests when he could, attend class as he could, etc., without absences counting against him etc. Most if not all schools are set up at least for basic undergrad classes this way. (Unfortunately, even with this, he wasn't able to complete the class.)

    But having the support of a doctor (only 1 is needed) makes all the difference in the world these days.

    FWIW, if I were you (having been ill since 18), I would really try to slide myself a LOT of slack and really pace yourself carefully.

    I didn't because my problems were always low-grade, built slowly, til I crashed just enough to have only average performance and then not be able to carry on at all-- the latter was due I think to my resulting lack of self-confidence. I always started out great, but couldn't maintain it, not realizing my problems were due to the increasing fatigue/brain fog/inertia.

    Now that I look back I can see the patterns in my life and I understand why. Just wish I'd been able to realize it then.

    all the best,

  7. aftermath

    aftermath New Member


    I got sick with ME by soph yr in college during a super high-stress period. 22 credits, varsity sport, total overachiever. I used to sleep 2-3 hours per night.

    I just totally overdid it and the stress (physical, not emotional) did me in.

    For this reason, I am a big believer in the fact that this disease is neurological, not infectious in nature.

    Since then, I have slept 10-12 hrs night minimum and never felt rested, lost tons of physical strength, etc.

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