Why I don’t like most online support groups

I find a lot of online support groups draining as hell.

Quick disclaimer: I’m specifically talking about Facebook and Reddit support groups here, since those are the only ones I’ve been a part of.

As someone who’s always been the only disabled person in the room, and who doesn’t have a huge support system, I’ve always been searching for some sense of community.

And when you have a rare disease like CMT, that usually means finding whatever free, open-to-everyone support group that exists on the internet. And while it’s a huge pro that spaces like these do exist, there are also some real cons.

In my experience, there are two things that always seem to happen in these types of groups:

The first? They tend to be filled with people who were just recently diagnosed. Or people who aren’t diagnosed yet, but are worried they might be.

Which, of course, makes complete sense. Most people who are newly diagnosed or are seeking a diagnosis are scared and overwhelmed. Or are desperate for answers.

But so often, what happens is you end up seeing post after post of things like:

“I just got diagnosed with CMT and I feel like my life is over.”

or

“I have all these symptoms, I really hope it doesn’t end up being CMT.”

And I want to be clear: I’m not here to shame anyone for how they feel about their disability or diagnosis. Everyone’s feelings are valid, and we all have the right to express those feelings in whatever way we need to. And like, it’s just not my place to police that.

But, I do think we need to talk about how those kinds of posts can make others feel.

Because even if it’s not intentional, those posts can kind of feel like someone’s saying, “I really hope I don’t end up like you.”

And being part of a support group where people are framing my existence as a nightmare or their worst-case scenario?

Not fun.

The second thing that always seems to happen?

I’m going to speak from experience here, but as someone who has been disabled since birth, I’ve often found myself thrown into a role where I’m doing a lot of emotional labour. Or educating. Or both.

I’ve had people message me out of the blue with really heavy, personal stuff. Sometimes it’s about their fears around how their CMT might progress. Or it’s parents processing their kid’s diagnosis and grieving that they might not have a “normal” life.

While I always try to respond with empathy… it’s hard. Especially when I’m not in a place to carry that for someone else.

And I get it.

When you're scared, it makes sense to look to someone who's been there. I'm not saying people shouldn't ask questions or reach out.

But that support needs to be mutual. And there has to be consent.

So, what kinds of spaces have I found helpful?

Therapy. Yeah, I know. Everyone says it, but honestly, finding a therapist who I click with has been so helpful. I was the biggest skeptic, but sometimes having a professional — even if they don’t share your lived experience — really does help.

The community I’ve found through social media. Social media gets a bad rap, but I’ve had some of the most meaningful, validating, mutually supportive conversations of my life over on Instagram.

I also think there’s a lot of potential in smaller, more intimate groups — whether that’s online or in-person. Ones where the vibe is more community-focused and where the goal is to actually connect.

What do you think?