“The trauma of not being seen.”

Disability and illness

What is described in this article is awful and horrible and makes me angry and frustrated and sad, but not surprised. It’s happened to so many women I know (and some others), including myself.

But what is horrible is when that event, that trauma, isn’t the end of it. Sometimes it’s just the beginning.

When I started to become ill, I went to the GP, to the emergency room, got x-rays and ultrasounds… And they never found anything.

I had such strong belief in the medical system, and had the same predjudice or naivitee that so many do. I’m too young to be sick.

At my age, in my twenties, I should be well. Healthy. My problems should be temporary. I started to wish that they would find something, anything. A tumour, just so they could take it out. So that they could take away the bad stuff and heal me.

That never happened.

Eventually, I got a diagnosis. Or three. And I thought, ok, it’s not a good diagnosis, it’s chronic and there’s no cure, but at least now I have a name for it. It’s real. Now the doctors and others who doubt have to take me seriously. I AM ill.

But they didn’t. They continued to neglect me, and diminish my suffering. And that is a very traumatic experience. Not only cause we believe in the system, and believe that doctors should listen to us, but because it does something to you. It makes a mark every time someone brushes you off when you ask for help.

It got so bad that I changed doctors six times, and started bringing a parent. Then they listened more. When I sat in the waiting room at GP no 7 (or was it 8?), with my dad next to me, I was so nervous that I was shaking. Luckily she was quite empathic but as it turned out, others wasn’t. And I could go on about that, but I’ll stop here. I just wanted to talk about what they in the article call “the trauma of not being seen.” Because that is a trauma. It’s diminishing and humiliating, and it scars you. And that is on top of the trauma of the illness, the thing that makes you go to the doctor in the first place.

It is traumatic to be sick. Both acutely sick and chronically sick. It’s a trauma, and we don’t talk about that enough. The psychological aspect to physical illness. 

”Rachel’s physical scars are healing, and she can go on the long runs she loves, but she’s still grappling with the psychic toll—what she calls “the trauma of not being seen.” She has nightmares, some nights. I wake her up when her limbs start twitching.”


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