I also have POTS, endometriosis, and extreme sensitivity to fragrances (maybe MCS, who knows). I’m single, late thirties, with a good job. I just got endo surgery which will hopefully resolve my endo symptoms for a long time. I’ve been managing the rest of it intensely for 10 years and so I’ve been able to support myself and work full time. My symptoms are under enough control that they aren’t scary anymore, but despite that good stuff:

The milder symptoms are still enough to make it so I can’t live a full life. I haven’t been able to date, to live where I want, or to have the career or lifestyle I want. I feel like I can’t trust myself to plan for anything in the future because my health is on a knife’s edge. Eating the wrong thing, being too hot, there being low atmospheric pressure - anything can trigger me being bedridden. I loved outdoor sports, seeing art, cooking - none of those are very practical for me anymore except in low doses. Worst is that I am so isolated because of the fragrance issue. I can’t stand having people in my home and I can’t stay at most other people’s.

I try to stay positive. It’s hard. I have a plan for trying different treatments and etc to achieve optimal health to hopefully make things easier. So I have stuff to enjoy and make me smile, I have tried dozens of ‘safe’ hobbies but I honestly don’t like them that much. It’s so hard. I don’t have friends or family willing to help me. I can’t move in with anyone for support to or to save money. Doing this alone freaking sucks. I would love to have a partner or a family- but I just don’t see that happening. I’m honestly wondering what is even the point of living with this? (I see a therapist regularly, etc, but I’m asking people who truly understand)

I keep wishing I had more money - I could move away from where I am and hopefully find a good community. But I’m also terrified because you all know how dicey finding safe housing is.

And I can’t save money because of all of these issues: I am in a HCOL area but can’t be in an apartment or townhouse because of fragrances, healthy food is expensive, doctors are expensive especially a good therapist, supplements are expensive, my air filters running constantly are expensive, keeping the house temp so that I don’t feel like death is expensive in the summer, and basically anything that is ‘friendly’ to me is probably more expensive than the frugal option a normal person could choose. Because of all of this, I am in debt and have no savings. I worked my way up in my job so that I am finally able to pay down the debt. But the are constant (medical) setbacks.

I really want to move away from where I live for lower cost of living - but again, I am not guaranteed somewhere safe and I’m scared of that gamble with no $ cushion.

Has anyone else been where I am? (Hoping to hear from folks with this long term - I know my optimism took a nose dive after year ten) Did it get better? I could use some hope.