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Finleaf

365d

How do/did y'all deal with denial/self-gaslighting about your disabilities? I have a lot of EDS and POTS symptoms, to the point that my family and friends are fairly certain I have them even though I haven't got a professional diagnosis. But I just can't believe it. In my head, I rationalise all of my symptoms as "normal" or "not a big deal" or "I'm probably exaggerating/making them up" and so it feels impossible to accept I might actually have EDS and POTS. Even my therapist has told me I'm in denial 😂 Is there anything in particular that has helped you move on from the denial phase and accept + validate your experiences?

Top reply
    • ZeroMelody

      363d

      I think especially with disabilities that are present from birth (EDS) or develop gradually, often-times during puberty when everything is haywire anyway (POTS), it's almost intrisically accepted as "this is normal" in our brains. I have Benign Joint Hypermobility Syndrome and there is a picture of me as a baby laued oit on my mum's arm because she and Dad were like, "Heheh, look it floppy! 😂 ", and my mum is an occupational therapist who specialised in working with children with disability. So I was diagnosed young, right? NOPE. I wasn't diagnosed untill I was about 15 years old. So yeah, I can relate to the imposter syndrome feeling of, "But this is just normal, right?" quite heavily. I've found that one of the biggest, most helpful things for me has been talking with my (mildly mor normal) friends about the way my body is, and watching them just freak out about every once in a while because, "Holy Potato, you jist casually can turn your back into an 'n' shape?! Da'fuq???". It's kind of like the first time you mention to a foreigner that Aussie trees actively try to kill people, and they're like, " ... Wot?" and you finally realise that other countries don't have murder trees. 🙃

    • ZeroMelody

      363d

      I think especially with disabilities that are present from birth (EDS) or develop gradually, often-times during puberty when everything is haywire anyway (POTS), it's almost intrisically accepted as "this is normal" in our brains. I have Benign Joint Hypermobility Syndrome and there is a picture of me as a baby laued oit on my mum's arm because she and Dad were like, "Heheh, look it floppy! 😂 ", and my mum is an occupational therapist who specialised in working with children with disability. So I was diagnosed young, right? NOPE. I wasn't diagnosed untill I was about 15 years old. So yeah, I can relate to the imposter syndrome feeling of, "But this is just normal, right?" quite heavily. I've found that one of the biggest, most helpful things for me has been talking with my (mildly mor normal) friends about the way my body is, and watching them just freak out about every once in a while because, "Holy Potato, you jist casually can turn your back into an 'n' shape?! Da'fuq???". It's kind of like the first time you mention to a foreigner that Aussie trees actively try to kill people, and they're like, " ... Wot?" and you finally realise that other countries don't have murder trees. 🙃

      • Finleaf

        363d

        @ZeroMelody I really appreciate your comment, but I gotta ask about the murder trees 😭 why are they out for blood?? How do you avoid being murdered by a tree?? I'm both fascinated and horrified 😂

    • Peggly

      364d

      I’m defo in the same boat. I’ll read some stuff about it and be like oh well that’s way worse than me. I think a lot of the time we forget the really horrible painful stuff too. I think I sort of came to terms with it when I met new people and had to explain about my bones cracking and dislocating realising that it’s not actually normal😂.

      • Finleaf

        364d

        @Peggly right!! I do that too when I read stuff. Maybe we do tend to forget some of the worst things. But yeah fair enough 😂

    • AnimalBoy

      365d

      Its really hard for me to accept my disability because no o.e actually knows what's wrong and some of the theories are autoimmune or epilepsy but neither of those things are easy to diagnose. Its helped me to look at the pain and fatigue charts and remind myself that abled people spend most of their lives at 0 on each scale unless they do something physically taxing or are sick, I haven't been at a 0 on either since I was a literal child. Even if I was making some of my disability up there are physical signs that there's something very wrong and its makes for good evidence that its not in my head.

      • Finleaf

        365d

        @AnimalBoy that sounds so hard! I know how that feels not knowing what is even happening or what the condition is. Thank you for your response <3

    • MilkJoey

      365d

      coming to terms with your illness can be very hard. for sure talk to your therapist about acceptance and talk to your doctor for a certain diagnosis, that could definitely help you accept it as well. denial is a common feeling, so don't be hard on yourself! think of it as something you're going to have to cope and live with for the rest of your life, and a diagnosis and treatment could help you live a fulfilling one

      • Finleaf

        365d

        @MilkJoey I appreciate this, thank you :)

☝ 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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