Are people members of groups related to their health condition?

[PerditaPickle]

I've a colleague with ME, and they've spoken about having taken some comfort from being a member of a group relating to their condition, I think a social media group (but they went on to meet up in person with at least one member of the group who they became quite close with).

This got me thinking, do I want to become a member of any groups relating to my condition(s) (I've a few)?

However, whenever I think about doing so I feel like I can't see any benefit.  In my imagination, any such group will just comprise others complaining about the same things I've been complaining about (for years, in some cases) and whilst group members could obviously commiserate with one another (and perhaps on a level which my friends and family, as non-sufferers, cannot) I just don't have the energy to be doing that.

- Is anyone here a member of any groups relating to their condition(s)?

- If so, how do you find it?  Helpful, unhelpful, so-so, or it varies?

- And if not, is there a particular reason why not?

[Jenett]

- Is anyone here a member of any groups relating to their condition(s)?

- If so, how do you find it?  Helpful, unhelpful, so-so, or it varies?

- And if not, is there a particular reason why not?

I lurk on a couple.

Usually, for me, it's particularly useful if I'm in information gathering phase.

For example, when I started using a CPAP machine, I spent a couple of months reading through two different forums pretty regularly. Seeing what people talked about helped a lot in figuring out what some of the common issues were, how to solve them better, and what might get better if I hung with it for a bit. (Also, I am really easily amused by forum dynamics on display, and they were great for that.)

I think is one of the better uses for them: there can be (on poorly moderated forums, or those with their own agendas) a lot of not-great info in some places, but a well-modded space with clear goals can be an amazing source of resources, troubleshooting, and general "things you might want to talk to your doctor about sooner than later" (and tips on how to do that well - I've picked up some seriously useful tips on "Use this phrasing.")

My sister also has a condition that might or might not be the inherited version, and it's something that might or might not have killed our father (and possibly his father - she's doing okay, but it's not trivial). But we can't tell - there's also a non-inherited version (which probably wouldn't affect me) and our father and grandfather died before the condition was identified as a defined thing (so nothing relevant in their medical records, just some suggestive symptoms and concerns.) My sister got me added to the relevant Facebook group, which I mostly peer at occasionally.

(The condition is something where if there's a certain set of symptoms, we can't assume the default tests for the symptoms will catch the actual issue, so keeping vaguely up to date on the current symptom lists and recommended tests and things like that is to my advantage.)

That said, I spend maybe 5 minutes total peering at it most months.

[Aisling]

However, whenever I think about doing so I feel like I can't see any benefit.  In my imagination, any such group will just comprise others complaining about the same things I've been complaining about (for years, in some cases) and whilst group members could obviously commiserate with one another (and perhaps on a level which my friends and family, as non-sufferers, cannot) I just don't have the energy to be doing that.

- Is anyone here a member of any groups relating to their condition(s)?

- If so, how do you find it?  Helpful, unhelpful, so-so, or it varies?

- And if not, is there a particular reason why not?

Over the last few years, I've participated in groups for three different medical conditions and the experience has varied widely.

The Good.   I was diagnosed with what I jokingly refer to as The Very Serious Illness^TM a few years ago.  So I did what one does when one gets diagnosed with a life-altering and potentially deadly disease- I promptly joined the first Facebook group I could find without really considering what I wanted/needed from such a group. 

Luck was on my side.  They're wonderful at providing good, solid recommendations and providing a supportive environment for everyone - survivors, new diagnosed, families and allies, and those who are at the end of their journeys.  They've been able to provide support in a way that family and friends cannot (including sharing dark humor that would not play well to anyone who hasn't been dealt this particular hand). 

The Bad.  I've also joined a couple of groups that I left fairly rapidly.  I walked away from one group because there was an underlying culture that encouraged victim mentality and one-upmanship that was frequently expressed in responses of "So you went through X.... Well, I went through X, Y, X again and then Z. Therefore, your suffering is insignificant relative to mine." 

I left the other group because there was litle or no moderation and as a result, there were some really dangerous advice being shared.  The most memorable of these was a homemade 'anti-anxiety' tincture made from a highly poisonous plant.  Not surprisingly, that particular group is no longer around.

The So-So.  I've joined a couple of gluten-free groups because I have a severe intolerance to gluten in any form.  The groups can be good resources for recipes and dining recommendations. Some of the folks are also very supportive when it comes to the "I'd sell my soul for beer and a slice of 'real' bread right now" moments.

*wipes away tears at the memory of eating brown bread and drinking Guinness*

Ahem, moving on... The groups are also full of people who are gluten-free as a dietary choice and who get upset when recipes are posted that don't fit their dietary plan (oh the carbs, the terrible carbs!). 

Also, there are a fair number of people who can't be bothered with internet searches for basic information or who spread false information.   Fortunately, those people get schooled quickly, but it's a non-stop stream of foolishness at times.


I'd say it's worth it if you can find a group that's a good fit for what you want/need and that has good moderation.  Like you, I don't want to be a part of a group whose main focus is to talk mostly about the condition without providing something more - whether it be support or information that isn't available elsewhere.   

[Sophia C]

- Is anyone here a member of any groups relating to their condition(s)?

- If so, how do you find it?  Helpful, unhelpful, so-so, or it varies?

- And if not, is there a particular reason why not?

On the whole, I prefer pan-disability groups about rights and access. But yes, I’m a member of a couple of Facebook groups and a forum relating to my physical condition. It’s been helpful at times, especially when looking for specific advice about things like treatments or experiences (usually early on in managing my condition), and for meeting people who have become friends. In part thanks to groups like this, I have a number of friends with the same condition as me, and we keep in touch about interesting developments. ‘Disabled/chronic illness Twitter’ and meeting people online in other ways has led to more supportive friendships, though. I’ve met many disabled friends in all kinds of online spaces, and talking to them is helpful in terms of access and rights, and learning about things like disability passes, benefits etc. For example, when I started using a wheelchair, I had a bunch of friends who could give me some great advice on accessing transport, getting support with work, etc. I had met many of those friends through groups. I even started the process of my PhD research by asking on a disability forum if the topic was interesting to people. Definitely been useful.

In terms of neurodivergence, I generally prefer to find other autistic/ADHD people individually and talk one-to-one, and I’ve stumbled upon a lot of great people over the years who I swap advice/experience with and we can support each other. Any autism forums/FB groups I’ve joined have been a challenge. But I did some storytelling about an autistic experience at an event recently, and someone handed me a card for an in-person autistic group (which I promptly lost but I think I remember which one it was), and I liked the person a lot and should really try joining. You never know when these things might turn out to be a lovely source of support and friendship. Same goes with online groups - I’ve had a few of those experiences.

However, whenever I think about doing so I feel like I can't see any benefit.  In my imagination, any such group will just comprise others complaining about the same things I've been complaining about (for years, in some cases) and whilst group members could obviously commiserate with one another (and perhaps on a level which my friends and family, as non-sufferers, cannot) I just don't have the energy to be doing that.

I’ve found that you quite quickly learn which groups are like that, and can leave. And I’ve been in some groups where *some* people are like that, and have decided if the cost-benefit analysis works out in favour of staying. F’ex, I’m in a ‘disabled during the pandemic’ group on Facebook, and for obvious reasons some people are doing a lot of venting, but it’s mostly specific people whose posts I’ve learned to skip. Most of the discussion has been useful and supportive.

I hope you find a good group, if you decide you want one!

[Noctua]

- Is anyone here a member of any groups relating to their condition(s)?

- If so, how do you find it?  Helpful, unhelpful, so-so, or it varies?

- And if not, is there a particular reason why not?

I am a member of a Facebook group for my condition. I picked this one group specifically because they're run by a non-profit that funds research and professional outreach for my condition and has a strong moderator team that disallows any information that's not vetted by the medical profession or any posting of links to information that's not peer-reviewed. I do like that it's a good resource for finding research specific to my condition- it can be exhausting for one person to trawl through all the latest research but when it's a team approach it's much easier.

However, there are a lot of things I find unhelpful and I tend to ignore about 90% of the content posted. There's a lot of heavily Christian "pray for me I'm in the hospital again" posts. There's a lot of people making bitter, bitter accusations of mistreatment at the hands of healthcare professionals which being a nurse myself I always take with a VW Minibus sized grain of salt, but then other people egg these posters on about how all doctors and nurses suck which bothers me. There's a lot of posts along the lines of "does anyone also have X along with this condition" which usually doesn't apply to me. And of course there's also the fact that Adrenal Insufficiency is divided into three basic types, and the type I have (Primary) is the less common type so probably a good 60% of the posts are dedicated to people asking about Secondary which I don't have and oftentimes has a different treatment regimen.