Social Question

Jeruba's avatar

Would you ever think of joining a community organized around a disease or disability?

Asked by Jeruba (41919 points ) October 15th, 2011

Cancer, diabetes, MS, heart disease, mental illness etc.: would you ever feel like being part of a “community” formed around your condition? By “community” I mean some kind of voluntary association, like fluther or like a network or support group and not a residential facility.

What benefit would you expect? Would it make living with your condition feel more normal or less normal to be among people who had the same problem and where that was the focus of your interaction?

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25 Answers

Neizvestnaya's avatar

I’m already a member of an online support group for families and loved ones of addicts. Being able to talk to other people in similar situations didn’t help me feel normal at all. It filled me with absolute despair, panic and anger, for awhile anyways.

tinyfaery's avatar

I’m not a joiner, by nature. I’d never voluntarily include myself in any sort of group that offers support for anything. That sounds like torture.

Coloma's avatar

More likely I’d join an animal illness support group like ” Mothers of geese with Bumblefoot.” lol

filmfann's avatar

When we were looking for a house 23 years ago, I asked my wife if she wanted to move to Fremont, where there is a large deaf community. She said she didn’t want to, because many of them would not like a mixed marriage (hearing person and deaf person). She also didn’t want to be considered a deaf person. She wants to be thought of as a person who is deaf.

Seek's avatar

I was a member of a pregnancy message board during my knocked-up-ness.

I learned not nearly quickly enough that a common state of being is not enough to form lasting friendships (or even suffer through common niceties). I’ve never been involved in more virtual catfights in my life than those few months.

Take my advice – make friends with people because you like them, not because you happen to share a malady. (Yes, morning sickness and natal diabetes are maladies)

chyna's avatar

I tried to get my mom to join a group for people with urostomy’s. She had bladder cancer and had lost her bladder. She refused. She didn’t want that to define her.

YARNLADY's avatar

Yes, I have received a lot of useful, helpful information and support from such groups. I am a joiner and always have been.

Mariah's avatar

I would and I have. I participate in a message board for people with ostomies and people who have gone through the surgery I’ve had to reverse their ostomies.

The main benefit: no shame. Bowel surgery is gross and embarrassing and not something that one can talk about in just any company. On the other hand, it’s difficult and stressful and not something you can expect somebody to just keep bottled up without going insane. It is really nice to have a place to vent where I know I’m not being judged.

I had a lot of my worries assuaged by them when I was first starting my surgical process and now that I’m done with it I get to pay that forward by helping out the newbies.

Though I find that as I get healthy and no longer want sickness to be such a large part of my life, it gets harder and harder to read about other people’s pain. I go there rarely these days.

njnyjobs's avatar

I am part of Autism Awareness community. I advocate for a young adult with the disability….and try to help parents of young autistic kids go through the terrible reality of having an autistic child.

Adagio's avatar

I have Multiple Sclerosis but can’t imagine anything worse than getting together with others who also have the illness, I just want to get on with life to the best of my ability and enjoy friendships with people for no other reason than we enjoy each other.

JLeslie's avatar

I was for a while; an online community. It helped me a lot for several months.

cookieman's avatar

No. I am a diabetic, but I have no interest in defining myself by it.

I want treatment and advice from good doctors – not from a bunch of other porkchops who also can’t resist cookies.

Bellatrix's avatar

I am not sure. I think it would depend on my experience with whatever condition it was. I would not discount it though. I think it would be useful for gathering information. I, as others have said, would be reluctant for it to become a significant and time consuming part of my life. I would not want to be defined by whatever was wrong with me.

zensky's avatar

GA ^ – my thinking as well.

JilltheTooth's avatar

Another GA to @Bellatrix : I have no personal experience, but a close friend with a severely disabled son found some online fora to be helpful for finding resources, but unrealistic and depressing about the personal issues that go with it. I have known others who have been helped immeasurably by those with similar situations. And none of this means anything because I don’t have my own story on the subject. Sorry

JLeslie's avatar

The experience does matter I think, but to add onto what @Bellatrix wrote, it helped me because my condition was difficult to diagnose, had no clear treatment, or cure, and finding people who had similar symptoms was comforting (to not be alone) and to see what they have tried to feel better, or what doctors were specializing in the problem. Something like diabetes, is pretty straight forward, and fairly understood by the medical commuity and controlled. Other diseases and syndromes, some of the biggest stress is finding doctors who can help, and the newest research on the topic. I wouldn’t want to be on a website regulary just to hear people complain and feel bad for themselves, but once in a while a little complaining to others who really understand can be cathartic.

mazingerz88's avatar

Yes why not. I would get a better understanding of the condition and could commiserate with others in the same plight as I am. Thing is, whether I’m depressed myself or has the energy to emphatize and support someone at that moment, a community is the best place to do something about that.

rebbel's avatar

I probably wouldn’t.
Because of being in a community like that I have the feeling that a lot of attention on the problem/disease will be brought and I am more a person who doesn’t want to focus on it.
Not denying, but not focussing on it either.

faye's avatar

I participate in an osteoporosis forum, arthritis forum and chronic pain forum. I can find out who has tried what and with what results andd I can add my own info. One of the sites turned into a ridiculous back biting coffee klatch thing so I don’t go there now but the others are useful anc comforting too sometimes. Nobody knows but someone who is also living with the same stuff.

YARNLADY's avatar

I don’t get how finding tips and suggestions for your issues is “defining” yourself by it.

Neizvestnaya's avatar

This being defined by the people you associate with who share a particular something, this is what many addicts don’t want to be a part of and what makes traditional groups like NA/AA so difficult for them.

Ron_C's avatar

I joined our Senior Citizen’s organization, that should count. There’s something wrong with all those old farts.

Jeruba's avatar

Like @YARNLADY, I see a big difference between seeking the company of others (not constantly but at regular intervals) based on a shared interest or concern and carrying that affiliation into the rest of your life as a self-definition.

Suppose I go to a meeting where I have to say, “Hi, I’m Jeruba, and I’m a userholic” in front of other userholics, where the topic is userholism and we’re all there to help one another with it. That’s a totally different matter from holding userholism constantly in the forefront of my self-awareness to the extent that that’s how I present myself to the world at large. That would be defining myself by it.

Moreover, for some the need for the work of the group is greater than an aversion to self-identification. If I declined to go to the meeting just because I didn’t want to have to self-identify as a userholic, I might be putting my sobriety at risk through denial.

But 12-step programs are a special case, in that the group meeting is a major source of the treatment. I was thinking more about having, say, diabetes and going to a regular meeting for diabetics. The group doesn’t supply the treatment; it’s more about understanding and living with the condition.

EmJay1070's avatar

I have joined an online community for a little known about (but slowly becoming more mainstream) mental health disorder. There were advantages in being able to read through other peoples experiences, and over time I became friendly with the moderator and creator of the site. I know from conversations I had with some people on that site that they found it a valueable resource and they gained a lot of support.

However, although I found the above to be true, for the most part, unfortunately the chat feature at times was spoiled by teenagers talking complete nonsense, about topics that weren’t even related to the purpose of the website. Some of the teenagers were also quite rude to the adults on the chat feature and would deliberately exclude us.

In the end, I got fed up of being excluded from the chat, and complained to the moderator. She didn’t want to take action because she felt sorry for the teenagers. So did I, to a point, but there wasn’t the same support for the adults. This wasn’t a teenage website however. It was set up as a support website for a mental health problem. I deleted my account when I discovered the moderator was being rude about me to other members.

Adagio's avatar

While I have MS, I very definitely have no desire to join a group of people with the same disability, it is something I consciously decided very early on and still feel the same way. I just want to get on with my life and continue my own friendships with no emphasis on MS whatsoever, living with it is enough for me without discussing it any more than is necessary. I appreciate and respect that others find it really useful but the concept is not for me.

I’ve just noticed this is an old question and I have already answered it, still feel the same way though.

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