"Invisible Illnesses"

I've suffered with chronic illnesses most of my life on and off, but since most of them are "invisible illnesses" I get a lot of criticism from people who think I'm just lazy or faking it for attention. I had a lot of migraines in high schoo (which I'm thinking may have been caused by a hormone imbalance that was also causing me to get cysts on my ovaries and other fun issues since they seem to have cleared up after switching to Depo-Provera shots from birth control pills). I also have tons of digestive issues. I throw up a lot and they don't really know why. I've had recurring gastroparesis which sometimes causes vomiting and sometimes just makes it incredibly painful to eat anything.

I've been having a flare-up of that for several months now (I had to cut down to part-time at school because I was spending so much time throwing up or in pain that I just couldn't get my work done), and I'm starting to get a resurgence of those old criticisms again. I had forgotten how hard it is to stay strong and keep trying to live every day like it's normal when you have people coming at you from all angles telling you to "get your shit together" and "try harder" and "make more of an effort" at things, when I'm already running myself ragged just to get to the bare minimum of what's being asked of me. It's so frustrating trying to explain to these people that even though I may look just fine on the outside, I really am very sick and I need understanding rather than criticism to get better.

It gives me a lot of anxiety and has caused me to become depressed in the past because I just feel so useless sometimes, like I'm never living up to what people expect of me.

I'm not even taking the main classes for my major this time around because the instructor for that class was the absolute worst offender. She's one of those who believe that yoga and tea and a "better attitude" can magically just fix any legitimate medical issue. The thing is though- up until I got to her class every day my attitude was pretty damn positive all things considered. She just refused to accept that my acknowledgement of my VERY REAL limitations wasn't just an attitude problem. She had convinced herself that I was just a pessimist who didn't want to try, when in reality I'm a realist who tries as hard as I can, but has finally after 23 years of living with these illness issues accepted that there are things that I will just never be able to do.

It kills me because now that I'm away from her I'm feeling so much better already, but I know that I can't just avoid her forever because she's the only instructor for that whole department and I can't just stop taking the main classes for my major. I'm terrified that I'm going to get myself better and then as soon as I start taking her classes again I'm going to get sick all over again.

How does everyone else who deals with "invisible" illnesses cope with these types of people? Do I need to get some kind of disability paperwork started with the school to get her off my back? I really hate to do that since I'm not ALWAYS sick, but she seems to be the only one who is having trouble accepting my illness as a reality (though she made a comment at least once a week on how much weight I was losing. DUH, I CAN'T EAT!). I could almost deal with not being able to work and having to spend every waking hour I'm not sick trying to keep up with homework if I didn't have to deal with someone refusing to acknowledge the huge sacrifices I'm making in order to stay in school through this.

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20 replies since 15th July 2014 • Last reply 20th April 2017

I don't really know what you should do about that major teacher, but I know what it's like having an 'invisible illness'....I get headaches and migraines ALL the time! I'm in secondary school at the moment and it's horrible when you have to ask to go home even though there's no obvious symptoms. Most of the time I just try and stick it, because, as you said, people think I'm faking it or being pathetic.
Best of luck though (sorry I couldn't help) x

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Maybe get a doctors note explaining what you have and then talk with your teacher and explain to her how her attitude is causing you stress which can lead to flare ups and that you would like it if she could be a little more compassionate to your illness. And maybe show her these: http://www.mayoclinic.org/diseases-conditions/gastroparesis/basics/definition/con-20023971

http://www.mcw.edu/generalsurgery/patientinfo/Foregut-Surgery-Program/Gastroparesis.htm
-Gastroparesis attacks can occasionally be triggered by infection and stress

p.s. Have you tried a natural approach at all?
http://www.drweil.com/drw/u/QAA400595/Natural-Treatment-for-Gastroparesis.html
http://www.home-remedies-for-you.com/remedy/Gastroparesis.html

I hope this helps;)

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Thanks for your comments.
Steph. high school was really rough for me too since the only ways you were allowed to be sent home were if you had a fever or if you actually threw up while at school and showed it to an administrator or the nurse (yeah, EW, but those were the rules). I very nearly wasn't allowed to graduate with my class because I finished the year with 25 or 26 excused absences and the school board only allowed for 12 (with an exception for up to 20 in cases of emergency). I had to meet with a counselor and the principal and explain my situation and they ended up letting me off since I was still maintaining a 4.0 GPA (which is straight-As if you don't use that grading system).

Crafty Cat I have actually considered more natural remedies, but unfortunately I also have bad acid reflux which is irritated by things like ginger. Plus my insurance only covers medically approved treatments, so the only thing I can take for it is Reglan. It has some scary potential side effects if you're on it too long, but it's been very effective and so far I haven't had to be on it for longer than 6 months at a time. I have an appointment with my doctor in a few weeks though, so maybe I can try and get him to give me something I can pass along that would explain my situation better than I can.

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This is what I did.

I quit eating anything out of a box or a bag. If you look at the ingredient of your food before you eat it you will find things like; dextrose, malodextrin, sorbitol, etc. to preserve freshness in your food. TBHQ and BHT are derivatives of butane; also to preserve freshness. These things are killing you and everyone around you faster..
Aside from what I believe to be a hormone imbalance and hypOglycemia, the foods that I was eating were only making it worse. As high sugar food and low glycemic foods crash the blood sugar, so needless to say I tend to try to kill myself daily by eating cane sugars.. I have have changed my diet. I eat mostly "raw" foods; as in I buy it myself and "process" it myself. Even making your own almond milk at home is food processing but you do not add the preservatives to your own food so you may find that you feel healthier and stronger by just processing your own food at home.
I also recently made an apricot jam with no sugar. It is a bit bitter however; I like it just the same because shockingly, I like apricots and their natural sugars which do not! cause sugar spikes and drops (for me) so try out buying veg not canned or frozen. No meat from any establishment other than a butcher or market (cook it yourself) MAKE YOUR OWN BREAD!!! bread is the worst offender.

Once you have spent some time making your own food and getting past the withdrawals of the processed nasty food, you may find yourself saying "It's been weeks since I've vomited." I know I have…. I vomited a week or two ago BTW because I ate M&M's before bed. I haven't eaten M&M's in two months (due to "organic" dieting) and I couldn't take it. I vomited at 5am and will never touch M&M's again!
Hope this helps. I have foregone school a few times because of this. I am 27 and am very low on the income front because I don't have my education background, I have a sick background. So try eating strait food and get back to school you don't want to let the big corporations win!

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I had horrendous, crippling stress my first few years in college. One of the symptoms of the "general anxiety disorder" I was diagnosed with at 19 happened to be that my stomach would tense up, and I couldn't eat anything without feeling really sick afterwards. I kept down a lot of what otherwise would have been vomit.

I was prescribed a medication that helped my stomach avoid the affects of the stress, and it helped a lot. It made me sleepy, too, so on really stressful days, I could take it before dinner, then get some decent sleep. One of the side effects was depression, though, which hit me a few times but it was nothing major--just that general "down in the dumps" feeling. It was worth it to feel a little sad for no reason than to feel crippling stomach pain because of stress. I forget the name of the medication, though.

What always helped me outside of medicine was to have a mug or two of chamomile tea whenever I was feeling anxious. It's worked for a lot of my problems, actually.

I used to be an art major, and once I got away from art, I felt a lot of stress melt away. At one point, my class days required me to be on campus 13 hours straight (for two printmaking sessions and a drawing class, plus one gen-ed science class). I was getting so little sleep and feeling so sick that I had 10-12 absences in each of my classes. I had to explain to my teachers what was going on. My drawing teacher was most sympathetic and changed the entire drawing final portfolio just to make sure I could get a good, fair grade; others weren't so kind.

If that one instructor is the reason you're avoiding your department's classes, you should perhaps meet with the dean of students, or even the university president, so that your concerns are heard.

I've experienced some of what you're going through. It will get better, especially if you force it to get better. Take charge and don't let that bad instructor ruin your day. Don't get sad about her, get even. Complain about her to someone high up on the University board, and she will either get told off, or fired.

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I have coeliacs which wasnt diagnosed until I was 21 so I had a hard time at school trying to explain how I was so sick then well for a while then sickto a point I couldnt get out of bed. Having a name for it was the one thing that stopped people (the tiredness can still happen and stress causes major flareups) being away from this teacher and starting to feel better shows that the stress she causes is some of the issue so maybe try speaking with a guidence teacher or chaplin or whoever at the school and ask there advice. And go back to your doctor and insist on blood tests tell them this has gone o long enough and needs to be sorted. If you dont get anywhere find a new doctor if they arent listening they arent there to help. I hope you feel better soon

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I have post traumatic chronic daily headache. Which is a fancy way of saying I have had a headache all day everyday for 15 plus years. It started with a line drive to the head playing softball for my high school team. Sometimes the headaches are manageable and I can almost forget them other times I can't even sit up with out getting nauseous. I've tried all sorts of things and unfortunately nothing yet has been able to get rid of them.
College was hard, it took me 7 years to get my degree. I was academically suspended twice, I had to drop out one semester, and after my suspension the school decided that full time status for me would be taking only half the credits. I had professors that were really great and understanding, but there was that one who was convinced I just liked skipping classes. Of course he was the only instructor for a course that was mandatory for my major. He actually went to the Dean of the department about me, then the Associate Dean called me in for a meeting. That was the semester I ended up dropping out, but through working with disability services and the Assoc. Dean I had the school backing me and the instructor still was not pleasant, but I made it through.
I hated asking for help and having to tell everyone about my problems, but the more people I informed about my medical issues the more I realized that people were willing to work with me. You may need to get the Dean, disability services, and the professor all together to make sure she understands what is really happening and what you need from her, wether thats extra help or just having her back off. I'm sorry you have to go through this.

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Thanks for the suggestions guys. I have actually had tons of blood tests and an endoscopy and even had my gallbladder removed to try and find relief or at least an explanation, but they still can't seem to find a cause beyond just stress. I've been tested for celiac and every known food allergy, but everything came back with no reaction at all. There were a couple instances where it seemed like it might be tied to a hormone imbalance, but I've been getting depo shots for years to prevent ovarian cysts and my hormone have been totally normal since about 6 months after starting the shots. The gastroparesis is definitely at least a partial cause, but I think the stress makes it much worse. My primary care doctor is fantastic, but there's only so much he can do to help, and since my insurance is through my mom who works at the county hospital, I can only see doctors in their system. I've been through all of them with no success. I have a pretty restrictive diet that I stick to that usually works just fine, but when I have flareups there's not much that can be done other than to eat twice as much as usual and hope half of it stays down.

Monica was the medicine that worked Zofran? I have an indefinite prescription for that and I take it when I'm having a particularly rough day, but it's really expensive ($10/pill before insurance) so I try to get by without it as often as I can. I call it my miracle pill though because when I do take it it works so well!

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About your stomach problem, do you think it could be a gluton allergy? My sister suffered from horrible stomach pain and bouts of vomiting for year and then one day she finally went into the ER and they discovered cysts on her ovaries as well as a gluton allergy. It's a long shot but maybe you could look into it.
I too get criticism for invisible "ailments." I've been prone to faint since I was an early teenager from heat, low blood sugar, and seeing blood but people don't believe that I faint unless they see it. My family members have actually asked me to faint and tried to make me faint. I'm also double jointed in my knees, shoulders, and elbows. People think that it's cool that I can lick my elbow but i actually do suffer from a lot of joint pain. I also dislocate my kneecap from time to time doing very mundane things. I also get really bad sciatica and can barely move at times. I always try to explain to people that I'm simply "old" even though I'm 19 so they'll try to understand the pain better.
However, there's no debate over the horrendousness of internal illnesses, but I continue to be thankful that I don't have an illness(es) that are deforming or debilitating and make me unable to function in society. The fact that I can walk outside and feel the sunlight on my face makes me remember that things maybe aren't so horrible.

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It's not a gluten allergy or any other kind of food allergy. Honestly my biggest worry is that it might be autoimmune-related, since I have so many other weird issues and my mom has Lupus. The weirdest thing was that my food allergy panels showed absolutely no reaction of any kind to anything, but yet I'm allergic to so many non-food things (grass, flowers/pollen, even certain trees, cats, antibiotics) that that just seems unlikely. I remember reading years ago that autoimmune conditions can cause you to not produce any antibodies for allergens or infections, even when you're still having a reaction. Unfortunately there's no set test for autoimmune conditions, and I'll have a hell of a time trying to get my own insurance in a couple years with a prediagnosed autoimmune issue, so we're not going down that road at this time. I do have tons of other conditions that are often associated with things like that though. I started getting gray hair at 19, I have to be on depo shots to prevent ovarian cysts, I also get cysts in my sinuses and cystic acne, my gallbladder was so out of whack that my bile was actually crystallizing (not even gallstones but actually crystallizing into sharp little deposits), I'll have a hormone test that shows a thyroid issue one week and then normal results the next, sometimes my blood won't clot right and I'll bleed for an hour from a papercut and then the next day be fine again, I can't be in the sun for extended periods or I get rashes and pass out, I even had a "growth" which I think was yet another cyst for years on my pituitary that eventually shrank and went away. Internally I'm a complete mess, but since none of those things have any effect on my outward appearance beyond making me pale as a ghost and throwing my weight up and down constantly, most people just assume I'm making it all up. But no sane person would go through the barrage of tests I've had done to me unless there was really something wrong. I've had MRIs and CT scans and Xrays and an endoscopy and this really fun one where I had to eat oatmeal treated with radiation to monitor stomach emptying and digestion (GAG!) and then sit under a huge machine without moving for over an hour (oh, hello claustrophobia!). It's frustrating that they can't put a name to it so I can at least have something easy to tell people.

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Zofran doesn't sound quite right. I think mine was about $4 for a 60-day supply through my insurance. I really wish I could remember the name. The pills are white and about the size of baby aspirin if that helps. Of course they may have changed over the past 5 years =/

I hope everything gets better for you.

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I also have an invisible illness. Mine is asthma and the issue that I face is that everyone and their neighbors know someone with it. I've been in the ICU twice this year and had both C-paps and Bi-paps. I say this to let you know that I get it.

YES to the disability paperwork. I found that while it didn't usually help, it gave me the backing I needed in cases where I needed to claim teachers actions as "discrimination"...because that is what it is. However, my brother has crohn's and he found that the disability paperwork allowed him the freedom to drop classes without penalty, get school funded tutors, diminish his work load in his courses, get on government assistance which paid a monthly sum, and reduce work hours. For him, it worked; which is why mine has different issues than yours might. I would also talk to 'higher ups' (be they teachers, principals, deans, or managers) before they got to know me and I would be clear "I have an accessibility issue caused by my disability that flairs up without (or with little) notice". This doesn't always work. The point, however, is that it gives you support.

There will always be people who "don't get it" and that is okay. Do only what you can and let them know, "I couldn't/can't do [that] because of my disability". Use trigger words. People hear "illness" and they think "oh, so its like a cold, right? It'll get better soon. Nothing to worry about". People hear "disability" and they think "Man! This s**t is serious. Do I need to know Emergency First Aid or something?".

Also, I find that reminding myself that their inability to walk to school, let alone two moons, in my moccasins is not my issue. They cannot understand and that is okay. May luck shine upon them that they never have to feel discriminated against because of diseases that no one can see. May they be healthy all their lives because no one should feel this ill and it is a shame that I, and you, do. My father taught me a trick when I was missing 75% of high school and no one would give me a break. 1) Look in a mirror and stare yourself down. 2) In a strong voice, say "I am amazing! Look at what I am doing. I am achieving my goals. I matter." (NOTE: you will probably feel embarrassed and think that this is stupid. It is. Keep doing it.) 3) Repeat twice a day and more often as needed (which is every time you feel like one of those statements is wrong). I found that after a year I started to inherently believe them, and when people would try to make me feel less than, I could walk away and not take it so seriously.

Good Luck.

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I suffer from Crohn's disease and went through school and college with all the problems and no diagnosis. I was very often sick or doubled over with stomach pain, and occasionally completely out of it like I was floating or in a dream or something. Fortunately for me all my teachers were great as were the medical staff and after the first few episodes they could see I wasn't 'right' and would let me go home if my symptoms hadn't eased up after an hour or so (I even had one of my teachers hold on to me on the walk to the med room so I didn't fall down, even though he wasn't legally allowed to). Less fortunate was the reactions from my classmates who definitely didn't believe in my symptoms which made me incredibly anxious and lucky me - anxiety can set off my flare ups Happy

I also suffer from some pretty nasty hypermobility which affects the amount of exercise I can do, and something referred to as 'prickly heat' which is where sweat can't escape and is trapped under the skin causing incredible pain - like thousands of ants biting the area constantly.

I think the worst part of the situation you are in, and I was in, is the not knowing. Since I've found out what is wrong I've been able to take steps to avoid what starts my flare-ups and I can lead a pretty normal life. I'm pretty lucky to live in the UK so we have the NHS, I can't imagine going through it all without it and having to pay for all the emergency treatment. I really hope you find out what's causing your problems soon, it's no fun living like that.

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Ugh, I know how rough "invisible illnesses" are. I am currently slogging through high school with a nasty case of depression. Luckily my school has been mostly understanding, but I do occasionally get the teacher who thinks I am really frickin lazy.

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