Invisible, not dismissible

Fibromyalgia is such a difficult concept to understand - especially for an autistic brain. Is it a disease, a disability or something else?

I feel like a normal person, who is severely inhibited on some parameters.

Some days I can be driving home thinking, wow I feel amazing, and five minutes later be hit by a freight train of pain and suffering.

The ADHD part of my brain that is convinced how it is right now, is how it always is, certainly doesn’t make it less puzzling.

When I get stuck in a negative self-image, I find myself wondering if I’m just lazy or making it all up.

Lately I seem more able to remember that I am all but that.

I love being part of something and have always found great joy in going to work.

It makes me a little sad when people talk about 'having' to go to work, because I wish I could.

What do you mean, wish you could?

Can is another difficult concept when it comes to invisible challenges.

What do you mean you can’t have a regular job, when you seem perfectly normal walking down the street?

I use the ‘if the house was on fire' test:

If the house was on fire, would I be able to move off this couch right now?

I know perfectly well that if the house was burning, I would pick myself up, and get out.

So why can’t I pick myself up every day and get on with it?

Every day I do. Many times, a day, some days without even leaving the house. I used to think success was something tangible, like a big house or a prestigious career, now I take great pride in doing half the dishes or doing nothing when my body demands it.

Which leads to my conclusion of what fibromyalgia is: A demand of my body to be heard.

I understand why people who haven’t experienced it can think it a load of bullshit or an excuse to get out of things we don’t want to do.

I have days when I wonder those things myself. Not as many now, because whenever I do, fibromyalgia answers and says: “Hey mate, I’m here, I’m real, thanks for calling.”

Having said that, it is stress related and perhaps a way of making stress more tangible. I have always struggled to know my own limitations. I never knew I had autism and ADHD, and the word can (or cannot) didn’t really exist in my reality. Without realising it I was under a lot of stress trying to fit the mold of what other people are able to do.

Like going shopping. For most people, going to the store to get cream takes five minutes of their day and then they move on to the next thing. For me it goes something like: My dad asked me if I could pick up some cream on the way to his house, he won't understand if I say no, so now there is a pressure on me to get cream. Normally I would go to REMA, but if I am going to Asnæs anyway, perhaps it would be better to go to NETTO, or Brugsen. Where will it be easiest to park? Will I be able to find the cream? Will the person at the register be in a good mood or a bad mood? And on and on and on (and on).

Can I get cream? Yes. Can I manage to get to dinner on time? Sometimes. Can I still have a coherent conversation during dinner? Not always.

Can’t you just get up, walk out the door and stop trying to figure it out?

Some days, absolutely! On those days I celebrate! And sometimes those days are followed by three days of not being able to move 'if the house was on fire'.

So, when you ask me if I can get cream, please know that if I say no, it isn’t for a lack of wanting to.

With time I hope to move away from the ‘if the house was on fire’ test, to something like the ‘what will it cost me’ test.

I am getting there slowly slowly, but as absurd as it sounds, I still struggle to figure out if it is reasonable to say no to getting cream, knowing it might cost someone else five minutes and me three days.

On the flipside, and I am sad it is an afterthought, but a thought nonetheless, I have abilities where I can do complex things in five minutes, that might take someone else three days.

Therein lies my hope for the future, for myself and for others: To get to a point where we can put our strengths to good use and say no to getting cream, without feeling guilty.