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Social effects of Autoimmune Disease

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Old 12-06-2011, 03:39 PM   #1
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Social effects of Autoimmune Disease

Hi all,

I was diagnosed with Autoimmune Hepatitis in 2006 after a really nasty initial "attack." I am mostly fine with managing it healthwise, in that I've found treatment that basically "works" for me. When I have a flare up, I now know what to expect and how to get things back under control.

I'm just wondering how you all deal with what I would call the "Social" effects of autoimmune disease. Because of having autoimmune hepatitis, I prefer not to disclose this to people in professional situations unless I absolutely have to, due to the stigma associated with "hepatitis" (if I tell someone I have AH, I then have to describe "I can't give it to anyone" and a long spiel about what autoimmune disorders are, which is just annoying sometimes.)

I'm also in school for a professional field that is very, for lack of a better term, macho. You are supposed to exhibit total dedication and work yourself to the bone, to be respected, it's just our professional culture. So to admit having a chronic health problem, which often results in fatigue/illness is generally viewed as weak, or people simply assume you are just lazy and looking for excuses. As a woman in a male dominated profession I am especially worried about this, because my personal illness is seen by my supervisors as indicative of all women being too weak to handle this line of work. Plus, the fact that AH complications are punctuated with chunks of being in remission and perfectly fine, also means that people think I am "faking illness" when it's convenient. The immunosuppressive drugs seem make me more susceptible to other kinds of infections - I've had pneumonia three times in the past few years, and more UTIs than the average person. So it turns into this cycle - ok for a while, then a flareup of liver problems, then comes stress time and some nasty infection sets in and I can't get well enough in time.

I have already had to take some time off and it's taking me 5 1/2 years to finish up what is normally a 3 year program. I am really close but once again, this semester, I got too sick to finish the term adequately and am now planning to withdraw from my primary course. I'm terrified to even contact my administration because they already are impatient with me and I don't know what to say anymore that won't come with a huge dose of shaming. I am becoming depressed because the more this happens the more clearly my peers and faculty think less and less of my intelligence and competence.

So on one hand, I would really prefer to keep my condition private from as many people as possible, so I don't tell everyone everything. If I start feeling sick I typically wait things out to see if I will get better, or if it's going to get bad enough that I "have" to let each new set of faculty know. On the other hand I feel forced to over-explain when it comes to that point, because I don't want people to think I am lying about needing time off, or the severity of it. A few times I have kept quiet until the last minute and am REALLY sick, which has resulted in some problems.

I don't know if this is normal or typical, but maybe you have some ideas on how to manage this situation better? How do you deal with this in life?

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Old 12-07-2011, 10:44 AM   #2
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Re: Social effects of Autoimmune Disease

I know it is hard to deal with these situations. I can't hide my disease at all as it is there for all to see. If someone asks, I tell em what it is, no explanations unless asked. They usually look puzzled and I move on with my life. Of course, I think men who think that women are too "weak" to handle something, or are "faking it" are either A)stupid and wouldn't understand either a medical or scientific explanation any way, or B) hiding their own perceived shortcomings and are fearful of truth. What is that saying? I don't suffer fools gladly, lol. I would tell your faculty what they need to know when they need to know it. You don't need to explain any thing you don't want to. If your chosen field is filled with "machismo", however, you ARE going to get flak. If you didn't have AH, they would find something else. I think you need also to reflect on whether or not you care what these people think or say about you, other than in grading or whatever. This is no doubt what it will be like in the real world setting of your chosen profession. No one can shame you if you haven't done anything wrong. You also need to take care of your illness as it presents and neither ignore nor over-invest in it, if you know what I mean. You can use these experiences as a practice exam for yourself before you hit the workplace. I think maybe some stress relief course or something like that might also help, along with maybe some assertiveness training, as in a business course that a sales person might take. Of course you must realize that I'm obnoxious by nature, lolololol I hope this helps a little and Happy Holidays! (PS, I got spots too! My daughter put makeup on me to cover the spots a few weeks ago and although the makeup was perfectly done, my husband didn't like it because he said I didn't look like me - go figure)

Old 01-05-2012, 04:06 PM   #3
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Re: Social effects of Autoimmune Disease

I absolutely agree with previous replay. First of all, I am sorry you have to be in this situation, but trust me, most of us been there -done that.

I worked in a very though field, financial institution with millions of $$$ involved (trading) and was only woman in the office with 30 "sharks". To swim in this type of pond is never easy, but when you are chronically seriously ill, takes a lot of you to look great, to be professional and to never show to anyone your pain or your fever is high.

We had gym in the office and everyone exercised every single day there, so did I. I would use knees braces b/c I had multi knees surgeries and was in constant pain. RA left them bone-on-bone. I wold be embarrassed not to go to the gym, I didn't want them to think I cant do that. Are you kidding me? I am pretty sure all of my guys would be very shocked to find out what demons I fought every single day. But they never heard me complaining or sharing with them my health issues, never.
First of all, it's not professional, nobody's business, fear of loosing my job, and I guess pride?

I can hear in your letter that you are smart and ambitious person - great for you! You want to achieve something big in your life, so do it! You dont have to explain to anyone why you tired or why you absent that day. We all have rights to privacy, so use it. I think your administration may need to know, otherwise they may get wrong ideas why cant you keep up with every day work. Pick a person who you trust (don't you have a counselor?) and explain your situation. This way you will feel so much better knowing that nobody judging you for being absent or not doing your work like everyone else.
Rather than that - just forget it! Don't explain yourself, don't worry about someone noticing anything. Trust me, nobody probably even cares, but in your conscious mind you worry, and all for nothing.
After all, pay attention to your health, to what you see in front of your future and to people who love you and who you love.
Rest of it, don't even matter.

Best of luck to you sweet heart,

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