disability or not?

[CoriCab]

I'm in an english class right now that focuses on the unusual body in literature and for the past few days we've been discussing various definitions of the word "disability" and its been making me think about my IC and whether or not I consider it a disability. I know that its not as outwardly visable as many things we would consider one, and I know that many days I just want to pretend that I'm fine and that its just something I'll deal with for a little while, but when it prevents me from doing the things I want, like spontanious intimacy or curtain shopping, I can't help but think of it like that. While I want to be strong and think that I'm still as healthy as I once was, there are days when I know I'm not. I've just been thinking about how people who haven't experienced it cannot understand how devestating it can be, how hard it can be to focus when the pain gets bad, and how hard it can be when we can't do the things we want, usually things that others can. I'm wondering if anyone else thinks about this or considers IC to be a disability (while hopefully a temperary one!) and what we can do to help others understand our condition.

[mlzippy7]

For me IC is DEFINATELY a disability. It cost me my job and everything I was working for. According to my doctor I have severe IC. I have to urinate every 5-15 minutes day and night and this isn't just a week or two. This is month after month after month. I don't leave my house besides to go to the doctors. I had to give up volunteering as an EMT. I had to give up everything I loved to do because of the constant pain and frequency.
I do hope one day it changes but at this point I have to say it is a disability.

[CoriCab]

Wow, I'm so sorry to hear all of that, hopefully you'll be able to do everything again, I'll be thinking about you! I think its different for me because mine hasn't forced me to quit school yet, but I do think that overall, IC is deffinately a disability. Which then makes me wonder why there isn't more knowledge about it, why don't we have Jerry Lewis doing telethons for us?

[mlzippy7]

I agree....there should be more information for the public about IC. I had no clue about it and I have worked in the EMS field for some time. It just isn't something they teach in school I guess. I was in nursing school....career change(after 10 years at my last job) before my IC got too bad and I had to quit but someday I would love to be able to finish my nursing degree.
I am glad you are able to attend school!! Good for you! What are you going for?

[windchaser]

i just recently filed for disability and had a hard time convincing myself that i did deserve it, i felt that since i can still walk occasionally lol, and i do have all my arms and legs and im notmentally unstable i felt like i wasnt hurting enough to get it, until my good friend told me that i have suffered enough and i do deserve it and that i had every right to file and not feel bad about it...

[A.J.]

Yes, I do agree with everyone that IC is a disability. Because of our pain, we have to give up activities that we were once able to do; we may have to give up jobs or school; we have to give up time that could be spent enjoying life...to me that defines a disability. I know what you mean in terms of outward appearance though. Just looking at you or I, no one would suspect anything was wrong with us. I sometimes wish I could tell someone I have something other than IC so they would understand, you know? If you tell someone you have diabetes or cancer, they can empathize. I'm not saying I would rather have cancer, don't get me wrong. I just want others to know where I'm coming from when I tell them I have IC.

[CoriCab]

Right now, I'm a Sociology major with a Creative Writing minor. My dad tried to get me to take a year off to get better, but I just couldn't imagine what I would do by myself all day.
Sometimes I think it would be easier if there were some kind of physical sign that we were sick, that way people would be able to tell. Because I look fine, I think that many people don't take it as seriously when I tell them I can't do something or that I'm in pain. And God forbid you have to send something back in a resurant because they left something on it that you can't eat! I think its a great idea to file for disability if you need it, I think that anything that forces you to give up your job is reason enough and I think we deserve it much more than the people who abuse the system.
I'd really like to know how much research is beng done and how to help it. Maybe I'll email Oprah...

[lisabar36]

Hi, I would definitely consider IC a disability, there are so many things I have a hard time doing. I am taking online classes because I can be home, close to the bathroom, have my heating pad. I am a nurse but I graduated in 1995 which was before I learned I had IC. I never know how I am going to feel when I wake up in the morning, and that is a struggle. I wish you success in your studies, thats is great! :)

[Berkshire Road]

That sounds like a really, really interesting course you're taking!

[alycat]

I've been contemplating disibilaty a lot lately myself because of our discussions in our Women's Studies class. I actually ended up failing my first semester at the University because of IC and am now at a community college. I still have problems, and while all of my professors right now totally understand and don't bat an eyelid when I get up during class, I still have issues.

My biggest pet peeve right now is that our cafeteria can't tell me what exactly is in everything! I've had two major flares now because there are no ingredient lists, which is very, very irritating! I wish that we could get schools to give us exact ingredient lists so that we can avoid everything that bothers us. Thankfully my school has an awesome bakery and I just get plain pastries for lunch. Not healthy, I know, but I really don't have any other choice!

[Claredale]

I am thankful that I didn't end up having to file SS. I am not patient enough for the process. I am grateful that I did quit working full-time for a few months to get myself back together after dealing with the fact that my IC was severe and I possibly may never feel like myself again. I worked slowly back into full-time work and would listen to my body and made it clear to my boss that I will do my job to the best of my ability. My job isn't nearly as stressful as my prior job handling claims which I loved. But I am happy with my new duties. I love working with the people I do and I am so grateful to God to allow me to do what I want to do. There may very easily come the day that I have to quit and file SS. But right now, I look forward to each day and look forward to "feeling" like myself again. I am living proof that there is life WITH IC!

Hugs and good niight to all!

TS

[Berkshire Road]

I went on SS because it was basically a choice: I could work (as long as I could get into bed immediately when I got home, take pain killers, and be left strictly alone), or I could live -- be a wife and mother, know what's going on with my kids, maybe get to the occasional swim meet or gymnastics meet. I still have much less energy than I did pre-IC, so I would say yes, I'm disabled, but I am beginning to feel more like myself. But I know if I tried to work again, it would all be over.

So I guess having to make that choice at age 39 is a pretty good indicator that I am disabled. But Social Security lists IC as a "potentially disabling condition," and I think that is absolutely right. Some people get better and live normal lives. So you can't answer the question, "Is IC disabling?" but you can answer the questions, "Is IC disabling for some people?" and, "Is IC disabling for me?"

Very interesting thread, Cori, thanks for starting it!