I ricochet between so badly wanting to have friends and escape the chronic illness isolation, and realizing if they’re biotypical they likely wouldn’t understand and finding good ones is really hard, and if they’re fellow spoonies, we oftentimes burn each other out if we get too close, and solitude ends up being ‘safest’ - has anyone successfully broken the cycle?

Postural Orthostatic Tachycardia Syndrome (POTS)

Chronic interstitial cystitis

Fibromyalgia (FM)

Myalgic encephalomyelitis/ Chronic fatigue syndrome (ME/CFS)

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  • Sarahjean


    No, but here incase someone does lol

  • Myhandshurt


    I feel this a lot. I always want to be around people, but then as soon as I am, I feel exhausted and like I want to be alone. My best friend and I typically take a little break when we are hanging out. And I think it’s nice and allows us to come back and do more together

  • whicheveroneiam


    I have! It takes a lot of work at first but gets easier once you know who’s good. I have a friend I love so very much who is biotypical but neurodivergent- that helps a bit with understanding too- and at first it was hard bc he would get upset when I couldn’t go out and do something after work and didn’t seem to understand why I couldn’t. One day I let him know how my feelings were hurt when he didn’t listen and he let me know how he was hurt, from then on we made an agreement to not keep any of our feelings to ourselves and to be honest. It’s stuff like Him: Hey want to go out? Me: no I’m tired Him: (unserious tone) you suck. Me: hey it actually hurts when you say that even as a joke. Stuff like that. Or even the other day we spent a weekend together and he absolutely pissed me off at one point and I told him that I needed to be left alone for 10 minutes or else I was going to lose it. After that time I went out and apologized for getting snippy and he stopping the behavior that was annoying me. It sounds cliche but it’s all about communication. The hardest part is letting people go who don’t understand or honestly never will. But I have found that those people are easy to identify when you realize they don’t even recognize their own limits or bad self destructive behaviors. It’s rough but there’s people out there.

    • Sarahjean


      damn yeah, i know how hard those people are to find, that reminds me of a friend of mine that passed 🙏

  • Kay777


    I can’t say I’ve permanently broken the cycle. It ebbs and flows depending on my physical and mental state. I used to keep my condition hidden from friends, but explaining it a bit has actually helped these friends understand that sometimes I just need to rest and recover. In a more broad way, everyone can relate to pain and when I explain how fibromyalgia and my coexisting conditions makes me feel physically and mentally, it helps people understand.

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