Pet_Semetary

4d

does anyone have any tips for how to get family to understand your chronic illness/disability?

I have pots and ehlers danlos, but since I still look (on the outside) like I'm fine/able bodied, my family has a hard time understanding that sometimes I can't do certain things.

like sometimes I can't do activities like hiking/swimming because it makes me feel bad, but my family doesn't understand that (I've tried telling them) but they always call me things like "party pooper" or "no fun" kind of thing. then pressure me into getting burnt out way too fast.

any tips on helping them to understand that breaks and not doing certain activities are things I need for my health and aren't just because I'm being too down on myself?

Pain

Postural Orthostatic Tachycardia Syndrome (POTS)

Ehlers-Danlos Syndrome (EDS)

Autism Spectrum Disorder (ASD)

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  • EDSdancer

    4d

    For me, explaining the spoon theory to my mom really helped her understand that I have limited energy and have to be careful with how I use it

    • Pet_Semetary

      4d

      I hadn't thought about that lol I'll definitely try it. Thanks!

    • Skylarkbard

      4d

      +1. My parents have picked up using it for their own mental bandwidth, too

  • trash_ratts

    4d

    I can't say I have a full awnser on this but for me it was a battle still is with my friends sometimes I just want to say that I wish you luck and it's gonna be alright in the end

  • SuccinctAbilities

    4d

    In my experience, having some sort of quantifiable information to explain to folks has helped some folks understand. Like, when I say “I can’t go hiking, I’ll feel like trash”, folks seem less likely to understand. Whereas if I show someone my BPM log, they can see the spikes and tend to be more understanding that a Thing Is Happening. Obviously, not everyone has access to monitoring/something quantifiable to show (and it also shouldn’t be on us to provide ‘proof’), but for the real knuckleheads I’ve met, it can help. It’s also important to realise that— no matter how patient and good at explaining you are— some folks will refuse to listen. That’s not on you, but it does suck. You’re still just as correct about your body and your abilities even without “proving it”, and what you’re dealing with doesn’t get any less real because someone doesn’t get it. 💕

  • GingerSnapple

    4d

    The spoon theory helped with my friends, but really just educating my family on exactly what I have and how it affects me has helped me most. They still get frustrated, but it helps them understand why at least

  • TunaGoon

    4d

    For most people the spoon method has helped. For the people who really were stubborn about it I: didn't bother (my step grandmother and my former school head so peole who didn'tmatter much but it had come up with), spammed them with articles (that they mostly didn’t read but at least saw) regularly for about a month and then they started to realize it really does a lot, or for the ones that were close things like passing out at dinner or having my shoulder dislocate in front of them were big wake ups. I sincerely hope you never have to deal with anyone who requires that last one. But if you do you aren't alone and just keep doing you. Calling you names is really mean and I probably wouldn’t spend much time around people who bullied me into things like that. I'm a smart alleck with people like that so I would probably say something like "I'm nit into a hike but do you want some cocaine?" And when they say What no! Call them the party pooper.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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