tallgirl22

112d

Does anyone else deal with able bodied people who try to tell you you’re healthy because you don’t have cancer? Even when you’re disabled from your disease it’s just dynamic and fluctuates day to day?

Postural Orthostatic Tachycardia Syndrome (POTS)

Ehlers-Danlos Syndrome (EDS)

Orthostatic hypotension

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  • Lew_Bear

    112d

    Wtf? There are people who think the only real debilitating illness is cancer?? I haven’t gotten that specifically, but I use a walker/wheelchair to avoid prolonged standing or walking on bad POTS days and I’ve had people say things like “I thought you were disabled” the first time they see me stand up or walk without a mobility aid. I feel like most of this stuff comes from a lack of awareness and empathy. People just don’t understand that there are countless variations of disabilities, and the severity of a lot of chronic illnesses can vary like crazy day to day

    • tallgirl22

      112d

      I think you’re right, it does come from lack of awareness so for me, when it comes from people who do research and claim to understand it’s even more hurtful.

  • ginkgowink

    112d

    Yes!! My mom just recovered from her second round of cancer and everyone had grace for her being sick but didn’t understand why I couldn’t “push through it”. She kept telling me I just need to accept it and move on, like it’s just a mental block that makes me disabled. And on top of that she had a way better quality of life while going through treatment than I do. She literally traveled and went skiing. And I can only take short walks close to home. This cancer treatment was much easier than her first time when she was very very sick, and I’m not trying to say we shouldn’t have grace for people with cancer of course, but my god just the title of cancer makes everyone fall at your feet while other debilitating illnesses can be totally ignored.

    • tallgirl22

      112d

      exactly! I get treated like it’s a mental block more often than not and it’s so invalidating. I of course do not want to compare illnesses and what is worse but I don’t understand why people can’t just listen to boundaries and respect our experiences with chronic illness. Day to day might look different but it’s traumatic and exhausting to live in a body that’s constantly against you.

      • ginkgowink

        112d

        agh yes, I’m sorry you’ve gotten that too. It is so invalidating and often can make you question yourself too. And absolutely, it is so traumatic and exhausting to always be fighting your body and feeling like it’s untrustworthy. I think a big part of it is that cancer can be fatal and a lot of chronic illness aren’t. People care a lot more when they think you’re dying. And I think people often don’t have enough empathy to think of being accommodating long term. Like people often only have cancer for a year or two and they either get better or pass, and I think people can be prepared to love someone through that, but it’s really overwhelming to hear that someone has a chronic illness possibly for the rest of their lives, but it probably won’t kill them. It just doesn’t fit into people’s ideas of serious illness. And then add on top of that that disability can fluctuate and it just really doesn’t add up for people. They truly just need to listen! And believe us, even though it doesn’t match the ideas in their heads.

  • Dancer_pinkb

    112d

    Yeah… my sister is paralyzed from the waist down and tells me that everyone has pots and it doesn’t count as a disability. Even she invalidates it as a disability. So now I don’t even bother telling anyone about anything. Many people think I’m being lazy on my hard days but really I just can’t get up with out blacking out or fainting. I just stopped trying to validate my disability and let people think what they want.

    • tallgirl22

      111d

      I’m sorry you go through that.. I hate when disability becomes a competition or comparing what’s worse. Just because it’s not visible it’s not valid to many and even when it is visible sometimes, it’s still not valid enough. I wish it was easier to help people understand

  • Fibrofoggirl

    111d

    I’ve had so many dr.s tell me at least it’s not cancer 🤬

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