Young, Sick and Invisible


There’s rather a lot I can identify with in this:

When I was 18, I was diagnosed with Psoriatic Arthritis. The following year, I lost the ability to walk, and was ignored by doctors who looked at my age before my symptoms. I struggled with finding a treatment and getting some mobility back.

When I was 20, I started experiencing some mysterious symptoms, including rapid weight loss, pain, bleeding, and more. I desperately searched for an answer, and eventually, a treatment.

The journey itself, to diagnosis and treatment, was incredible, difficult, and enlightening. Living with the disorders has been eye opening as well. Chronic illness is an invitation for everyone to comment: either with regards to a cause, a treatment, or otherwise. Suddenly, everyone’s aunt is an expert and everyone’s fad diet a cure. You wade through a constant stream of ignorance and lies, in a desperate attempt to find peace and a stop to pain. In my years living with both disorders I have been faith healed, poked, prodded, stuffed with powders and magic potions, and now is my opportunity to tell everyone about it.

My conditions were different, as were the exact problems they created on the side, but the experience of being disabled at an age when life is supposed to be treating you well has certain universalities.

Ania Bula (DearAnia) is writing about that experience in a book called, Young, Sick and Invisible: A Skeptic’s Journey With Chronic Illness. She’s funding it through IndieGogo, which means you can get yourself a copy and help support her through the writing process. I know I’m not the only person at this blog who is going to be interested in having a copy. If it’s a book you want–for yourself or for someone near you who needs someone to explain this stuff to them–check it out.

Comments

  1. says

    Thanks so much for posting about this. The more attention I can get, the more chance I have of actually getting this off the ground.

    One thing that I am not mentioning in the fundraiser is that fundraiser will also help me take more time away from work to work on my health. Which means hopefully, I can go into remission.

  2. F [nucular nyandrothol] says

    Oh my, yes. The SO went around with this multiple different times, ignored by doctors and denied by judges according to her age, as if that were the sole diagnostic indicator. The problem is that they are not really practicing evidence-based medicine, and also they have the inflated ego and willful ignorance psychological disorders.

    I want to love healthcare professionals, but far too many are utter crap.

  3. latsot says

    “My conditions were different, as were the exact problems they created on the side, but the experience of being disabled at an age when life is supposed to be treating you well has certain universalities.”

    Indeed.

    “I know I’m not the only person at this blog who is going to be interested in having a copy.”

    Definitely.

Trackbacks

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>