u/heldtogetherdaily

Hey everyone, I am 20 and need some ideas for things to do this summer. I am severely heat intolerant, meaning my body physically cannot handle being out in the heat. Because of this, I can't do typical summer outdoor activities, and honestly, I'm feeling really sad and frustrated about it. It sucks watching everyone else enjoy the weather while I’m stuck inside because my body won't cooperate.I really want to make the most of my summer break, but I need ideas for safe, low-heat, or entirely indoor activities that are actually fun for someone my age. What are some ways to have a fulfilling summer without overheating? Thanks in advance!

I’ve had HCBS for three years. It was the only thing keeping my head above water, and now it’s gone because of budget cuts. Because I lost my HCBS, I lost my medicaid, which was my safety net. As a secondary insurance medicaid was the only way I could actually afford my OT, PT, and the medications I need to literally function. Now I’m just... stuck?! I have private insurance, but without medicaid to offset the residual costs, I have no idea how I’m supposed to pay for all of it. I am so beyond angry. I’m scared, I’m exhausted, and I’m sick of being treated like a disposable expense by people who will never have to worry about how they’re going to pay for their next physical therapy session. It feels like the floor was just pulled out from under me, and I’m expected to just "figure it out" while my health is on the line. I’m not even looking for advice right now, I'm not sure this has a solution. I just needed to scream this into a space where people might actually understand how terrifying this is 😭

I’ve been diagnosed with FND for a few years now, and I’m only just starting to process how genuinely traumatizing it’s been to live with.

It took over two years after my diagnosis to receive any real follow-up care. Even longer to receive anything that was actually framed as “treatment.” For a long time, I was just… sitting with this diagnosis and these symptoms, trying to make sense of something that completely changed my life without guidance or support.

And I still don’t fully know how to feel about the diagnosis itself.

Like a lot of people here, I don’t know why I developed FND. Sometimes, it feels like the diagnosis was a cop-out, something that got assigned to me because I have a history of mental health issues. That nagging doubt sticks with me more than I’d like to admit.

At the same time, I have other health conditions, and so based on what we understand about FND, I can see how my body might have been more vulnerable to developing it. So I end up stuck in this in-between space of “this makes sense” and “but was I actually taken seriously?” does anyone else struggle with that?

I think one of the hardest parts of living with FND isn’t actually the symptoms, it’s the way this diagnosis can fracture your trust.

In doctors,

in the system,

& honestly, in yourself.

I find myself constantly questioning my own body, my own experiences, and my perception of those experiences. I’m still trying to come to terms with the fact that even if the diagnosis is accurate, the way it was handled still caused me harm.

I don’t really have a clean takeaway here. I guess I just needed to say this somewhere people might understand 😕