Stigma: The Disability word

I used to despise the disability word. I wasn’t disabled. I was chronically ill struggling to function in a world I just couldn’t quite fit into. That wouldn’t quite accommodate me because there wasn’t accommodation really. So I just sort of tried my best. Until that just didn’t work.

Maybe feared the word too. I just hated that the world expected so much functionality from me when I was in so much pain. It was like the pain ate away at my existence and society expected a fully functional person. So I forced myself into this survival mode where I simply worked and obliterated the rest of my life, in order, to do this one thing. And I feared eventually I would fail at that one thing. And when I did- what would I then be?

When I became disabled

You learn to try to fill the void of work in various ways. With your hobbies. Within your limitations. And these hobbies are hard to maintain. Hard to consistently do. But they help with self-worth and self-identity.

I have always felt ashamed I could not work, once it became apparent I couldn’t. A constant guilt eating at me that I couldn’t function the way I needed to and should. In the capacity I should. In the daily way I should. The self stigma I put on myself can be intense. It is a learned stigma that other put on you and then you put on yourself.

In many ways, I contemplate the idea of working in some capacity. In some niche. In some place. I just can’t fathom a place or space that would accommodate me in the state of health I am in. Or even the accommodations I would require in which to function. Which then brings on a sadness that I can’t even function in some sort of minimal capacity in any sense to fit in any place. But still my brain tries to figure that out. Some sort of scenario where that is conceivable or even in the future.

I try to write and I try to be consistent about writing. Although even that has declined in recent years due to fatigue and brain fog. Making feel like I cannot even achieve the hobby I so enjoy to the capacity I would like to or had in the past.

Do people doubt your disability?

It is probable we will encounter people who will doubt our disability if it is invisible. Doubt chronic pain because they cannot see it. Doubt symptoms that are not imprinted on our skin. Doubt the severity that they cannot see because it is so often behind closed doors. Label it other things- like laziness. Or lack of motivation. Or depression. Maybe they will doubt you should be on leave or on benefits at all.

Often perceiving their own preconceived notions of what disability is or should be. I think people see my drop foot and my difficulty walking and see a disability without thinking a thing about my pain and fatigue.

They cannot see under your skin. Walk in your shoes. See your symptoms or pain. They just cannot.

Maybe they will think since you are on benefits you should have no capacity to move, think or blink. No hobbies. No laughter. That you should wallow in in the misery that is your existence. That is a different sort of stigma but stigma nevertheless. Again, that disability should be this or that and not this or that. It must be a certain this and not another thing.

Feelings of worth

I always get the feeling of worthlessness. Like something is expected of me from the world I cannot achieve. People have a way of making people with disabilities feel less than. For just being themselves. For even just trying to do things. Do a little and then- you must be functional. Do nothing and you are faking or malingering or lazy.

Like we have to prove ourselves, our symptoms, our disability and wave it like a flag when all we want to do is exist. And cope. And improve as best we can. And try to get that well-being better day by day. Or achieve some balance. And all the effort we do to maintain is so constant and difficult. It itself takes so much energy.

There is supposed to be this immense shame when we actually do say we are disabled. If you date someone, and say that, what then? If you dare to try to go back to work- what then? If you tell someone what you do, what then? Frankly, you are supposed to feel shame. Shame on you for having a body that is not performing to the standards of society. That cannot function in the way others want.

Some people with disabilities think they will be judged for it. And they just are. I am and so are they. It is the nature of the stigma. We can sense it. It is there and sometimes it is blatant. Sometimes it is hidden. But in my history it has been quiet and loud both. Quiet and soft. Loud and painful. Both.

Wouldn’t it be nice to stay home all day

I have to work, but it must be so nice to have the day off

Must be nice to sleep in every day

May of us know being chronically ill requires a lot of maintenance. And I am aware of this too. I know the things I should be doing. I have written about my low motivation lately because I have been struggling so much with fatigue. So in fact, we spend so much time on the things that give us just shards of functionality. Things I have been unable to do at the moment. But will do soon as I can. Because we must.

Check out: I’m on Benefits, But Stigma Makes Me Feel Ashamed a great post by another blogger.

From ChronicallyNikki.com

Please don’t say that: It’s not worse