Online Forums / Support Groups for Chronic Illness & Disability?
July 15, 2016 6:28 PM Subscribe
I have a chronic illness (fibromyalgia) and identify as disabled. I am going through a more-than-usually rough flare, and need to reach out to others who understand the chronic/disability life. Please recommend me online forums, support groups, podcasts, $resources to feel less isolated! [NB List of relevant podcasts inside, for interested parties.]
I've got the medical side covered as much as possible. My partner is the most helpful, supportive, glorious person in all humanity. I'm "out" as chronic-disabled to all family, friends, and most work people. People do try to grok the challenges my life entails, but it's hard for those without direct experience to truly "get" it.
I'm starting to feel more isolated by my situation, and think finding a community of chronic-disabled others would really help. I tested the only IRL fibro support group in my area a while back, but the atmosphere was toxic. Also, me turning up in person to a scheduled thing often impossible. Googling has left me frustrated - a lot of what comes up seems to be a shill for gaming my health info in some way.
Dearest Mefites, I would really appreciate your (personal, if possible) recommendations for online forums, support groups, communities -- whatever -- where I can go hang out with people living the chronic-disabled life. "Hanging out" can also be via podcast, online resources, etc.
Fibromyalgia-specific is fine, but not obligatory. Ditto chronic illness-focussed. I say "chronic-disabled", as the nature of my condition as "chronic" can sometimes be an important piece of information. Or important community/group identity marker.
NB I already listen to the following podcasts that explore chronic illness, disability, and mental health:
- BBC's Ouch
- In Sickness + In Health
- Just A Spoonful
- Fully Sick
- The Accessible Stall
- The Mental Illness Happy Hour
- The Anxiety Shut-In Hour
I've got the medical side covered as much as possible. My partner is the most helpful, supportive, glorious person in all humanity. I'm "out" as chronic-disabled to all family, friends, and most work people. People do try to grok the challenges my life entails, but it's hard for those without direct experience to truly "get" it.
I'm starting to feel more isolated by my situation, and think finding a community of chronic-disabled others would really help. I tested the only IRL fibro support group in my area a while back, but the atmosphere was toxic. Also, me turning up in person to a scheduled thing often impossible. Googling has left me frustrated - a lot of what comes up seems to be a shill for gaming my health info in some way.
Dearest Mefites, I would really appreciate your (personal, if possible) recommendations for online forums, support groups, communities -- whatever -- where I can go hang out with people living the chronic-disabled life. "Hanging out" can also be via podcast, online resources, etc.
Fibromyalgia-specific is fine, but not obligatory. Ditto chronic illness-focussed. I say "chronic-disabled", as the nature of my condition as "chronic" can sometimes be an important piece of information. Or important community/group identity marker.
NB I already listen to the following podcasts that explore chronic illness, disability, and mental health:
- BBC's Ouch
- In Sickness + In Health
- Just A Spoonful
- Fully Sick
- The Accessible Stall
- The Mental Illness Happy Hour
- The Anxiety Shut-In Hour
Best answer: Apologies in advance if this isn't on target. This isn't something I know a lot about, but the fiancée of a guy I used to work with runs Chronic Babe and it sounds like it might be up your alley.
posted by veggieboy at 8:05 PM on July 15, 2016
posted by veggieboy at 8:05 PM on July 15, 2016
Best answer: Tumblr skews young but if you search for chronic illness and spoonie as tags and start following and checking their followed things, you can put together a fairly customized feed. My dash has a nicely sarcastic collection of helpful spoonie tumblrs. Then message people a friendly hi with a comment and start chatting on Tumblr.
posted by dorothyisunderwood at 8:53 PM on July 15, 2016
posted by dorothyisunderwood at 8:53 PM on July 15, 2016
Best answer: BrainTalk Communities is a goldmine. There's a fibromyalgia forum, but there is so much more there that is related to living with fibromyalgia. When I last spent time there they had an archive of years of valuable info. Look for a link to archives, but if the posts go back 7-10 years they may have reorganized again.
posted by Room 641-A at 8:15 AM on July 16, 2016
posted by Room 641-A at 8:15 AM on July 16, 2016
Best answer: Two Rooms Plus Utilities: I read it occasionally and I follow the author on Twitter. She has MS.
I have left all the illness/disability groups I used to belong to. They all tend to be toxic. Pecking order plus lots of suffering tends to go bad places. Obviously, some are worse than others and I sincerely hope you find a good group, but my experience is this is just a thing that is inherently hard to do well.
It is incredibly hard to have constructive discussion about what people find helpful in a group setting because anyone who doesn't do X will get defensive and argue against X and it turns into horrendous drama. So tip-toeing around sensitive topics tends to be de riguer and that often means tea and sympathy is all you can offer. It is possible to change the culture so discussion is more constructive, but then you become a target and that's a new burden in your life.
I have had better experiences with support groups I founded or co-founded. Part of what I did was always made it about something constructive so we were not just there to talk about our misery. Like one group that went well for a time that I was in on from the start (possibly not literally a cofounder, I do not recall) was about homeschooling with chronic illness. Another was founded to discuss brain wiring of neuro-atypical family members. So, we would post an article about brain wiring and talk about how that cast light on our experiences and how that might help us do things differently or frame the issue differently.
So, if you really want a support group that is constructive, I recommend starting your own and explicitly making it solution focused in some way and focused on (disability/condition/chronic illness) + (other topic entirely). Like "Working with Disability" or "Married with Disability" etc. If you just make it about the disability, it is easy to just be depressing because that is all people talk about in a way that just goes bad places.
I do blog about my own struggles with chronic illness. You can memail me if you want the link.
I can be found on Twitter as well and that is currently where I sometimes talk with people with chronic conditions. Twitter seems to be inherently resistant to pecking order BS. You can follow or unfollow who you want, so you can have conversations that, elsewhere, would be Verboten because the groupthink says so or whatever.
posted by Michele in California at 10:20 AM on July 16, 2016
I have left all the illness/disability groups I used to belong to. They all tend to be toxic. Pecking order plus lots of suffering tends to go bad places. Obviously, some are worse than others and I sincerely hope you find a good group, but my experience is this is just a thing that is inherently hard to do well.
It is incredibly hard to have constructive discussion about what people find helpful in a group setting because anyone who doesn't do X will get defensive and argue against X and it turns into horrendous drama. So tip-toeing around sensitive topics tends to be de riguer and that often means tea and sympathy is all you can offer. It is possible to change the culture so discussion is more constructive, but then you become a target and that's a new burden in your life.
I have had better experiences with support groups I founded or co-founded. Part of what I did was always made it about something constructive so we were not just there to talk about our misery. Like one group that went well for a time that I was in on from the start (possibly not literally a cofounder, I do not recall) was about homeschooling with chronic illness. Another was founded to discuss brain wiring of neuro-atypical family members. So, we would post an article about brain wiring and talk about how that cast light on our experiences and how that might help us do things differently or frame the issue differently.
So, if you really want a support group that is constructive, I recommend starting your own and explicitly making it solution focused in some way and focused on (disability/condition/chronic illness) + (other topic entirely). Like "Working with Disability" or "Married with Disability" etc. If you just make it about the disability, it is easy to just be depressing because that is all people talk about in a way that just goes bad places.
I do blog about my own struggles with chronic illness. You can memail me if you want the link.
I can be found on Twitter as well and that is currently where I sometimes talk with people with chronic conditions. Twitter seems to be inherently resistant to pecking order BS. You can follow or unfollow who you want, so you can have conversations that, elsewhere, would be Verboten because the groupthink says so or whatever.
posted by Michele in California at 10:20 AM on July 16, 2016
Response by poster: Thanks for all the answers, I will check them all out ASAP.
If anyone else has ideas - please keep them coming!
posted by thetarium at 4:08 AM on July 18, 2016
If anyone else has ideas - please keep them coming!
posted by thetarium at 4:08 AM on July 18, 2016
Oops, this is the link to the fibro forum in BrainTalk, sorry! Searching for fibro will also bring up other areas of the site discussing it.
posted by Room 641-A at 9:37 AM on July 18, 2016
posted by Room 641-A at 9:37 AM on July 18, 2016
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Possibly some people or hashtags on Instagram maybe? I've seen people use chronic illness and spoonie hashtags on there though I haven't sought them out. I've heard that Tumblr has a community of "spoonies" as well. (The Frogman being one of them.)
All I know is that I did some preliminary searching and came up empty for anything currently active in terms of websites dedicated to it. Things were either completely inactive or were more Q/A with barely any users and really segregated into types of illness (which mine does not fit into.)
I WILL say - and I am 100% serious - feel free to message me if you want a chronic illness penpal. I'm bored all day doing nothing but dealing with my illness and watching TV. It'd be great to chat with anyone else in a similar situation so this goes for anyone reading it too.
posted by Crystalinne at 7:20 PM on July 15, 2016 [2 favorites]