"People with invisible disabilities, such as chronic pain or some sleep disorder, are often accused of faking or imagining their disabilities. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc., and are not always obvious to the onlooker.

Invisible Disabilities are certain kinds of disabilities that are not immediately apparent to others. It is estimated that 10% of people in the U.S. have a medical condition that could be considered a type of invisible disability.

Nearly one in two people in the U.S. has a chronic medical condition of one kind or another. Still, most people are not considered disabled, as their medical conditions do not impair their normal activities. These people do not use an assistive device, and most look and act perfectly healthy.

Hundreds of conditions, illnesses, and injuries can result in a hidden disability - anemia, brain injuries and strokes, allergies, epilepsy, heart diseases, lung conditions, mental illnesses, and chronic pain are just a few examples. Yet, although we are all aware of these individual conditions, there is much to be learned about the shared needs and experiences of the hidden disability community as the unique group it is."


Friendly reminder to please use

spoiler tags and content warnings [cw]

Hexbear CoC

for sensitive content that falls under Hexbear’s Code of Conduct. You can find the spoiler tag here:

Alt Text of image

Alt text of image: a screenshot of a comment box and its editing options, with a dark theme, grey and dark grey background with white text. A skinny white arrow points to the “spoiler” option, which is an exclamation point inside of a diamond, and the 13th or second-from-the-last icon in the middle of the photo and at the top of the light grey comment box that reads “Type here to comment…” in white italic font

After clicking it, substitute the second “spoiler” with your content warning and the three underscores ( ___ ) with your sensitive content.


As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:

“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.

Mask up, love one another, and stay alive for one more week.

rainbow-has heart-sickle

  • MattEagle [none/use name]@hexbear.net
    link
    fedilink
    English
    arrow-up
    0
    ·
    23 days ago

    That sounds like Mast Cell Activation Syndrome. Most likely caused by the cancer or cancer treatment. If you aren’t dangerously underweight from the cancer and food intolerances, I highly reccomend Mounjaro, which is originally a weight-loss drug, but it has also proven to be a powerful anti-inflammatory at low doses, and is non-immunocomprimising.

    I feel bad bringing it up because it seems out of reach unless you have a smart doctor or money to spare. I was able to ration $200 of the stuff over 6 months, but like, that’s not ideal, of course.

    Every day it feels like the system itself is actively trying to kill you. It makes me so mad I could spit fire. Stay strong. Much love.

    • DisabledAceSocialist [comrade/them]@hexbear.net
      link
      fedilink
      English
      arrow-up
      0
      ·
      23 days ago

      Thanks for the suggestion but doesn’t mountjaro have a ton of side effects? I’m trying to cut down on the number of meds I take as the side effects are just too awful. Anyway I couldn’t pay for it and to try and get it on prescription I’d have to spend years trying to convince GP to refer me to someone then be on the waiting list for a few more years. Hopefully I’ll be dead by then anyway. I’ve only just managed to get a referral to a urologist this Feb after begging the doctor for help with my bladder issues for over a decade.

      • MattEagle [none/use name]@hexbear.net
        link
        fedilink
        English
        arrow-up
        0
        ·
        23 days ago

        Thanks for posting here so often btw. It’s very validating seeing someone else deal with the debauchery of European medical institutions.

        The side effects are all GI related. Mostly nausea. The dose for rheumatic people and MCAS is really small though, so I doubt you’d have any. The newest version called retatrutide has way less symptoms too.

        Honestly don’t bother with coordinating it with doctors. Just get a small amount from a chinese company if you ever have 50 quid left over one day (which is probably too big an ask knowing how abysmal UK welfare is). UK customs are more lenient than EU customs.