Hi, I’m hoping to hear from people who are severe or very severe with Myalgic Encephalomyelitis about your experiences with relationships.
I’ve been sick for about 8 years, and the last 8 months I’ve been in a prolonged, severe crash. I’m mostly bedbound, often can’t tolerate light or sound, and am very limited verbally.
I’ve lost pretty much everything when I first got sick — friends, family connection, and my world has become very small. At the moment, my support workers are really my only consistent human contact. No drs or care team.
I’m often too unwell to engage with social media or groups, which makes things feel even more isolating.
I’m in my 30s now (got sick in my 20s), and I honestly feel. .invisible, I guess. I’m someone who is genuinely okay in my own company, but I also feel like I still have a lot to give, and I still want to be able to share life with someone.
Realistically, it feels like the chances of that happening in my situation are incredibly low. So I’m not really looking for reassurance — I’d just really value hearing real experiences from others who are this severe.
Have you been in a relationship while severe/very severe?
How did you meet your partner (if you did)?
What does your relationship look like day to day?
If it hasn’t happened for you, how do you navigate that emotionally?
Even brief replies are really appreciated — I know how much energy it takes just to exist at this level.
It is genuinely disheartening not being able to show up in the world the way you want to, so thanks if you use your precious energy to reply.