I am disabled!

‘Honey… I am disabled’

‘You’re ok’

‘But I’m still disabled’

‘I know, honey’

Somehow, it suddenly hit me. I am disabled! There I was, lying in my bed in the middle of the night. I had been asleep and dreaming about this no doubt, but now of course I was wide awake and the brain cogs were turning like mad.

I know that, as an autistic person, I’ve learned to mask very early on, to try and fit in. And I think I became quite good at it. I have pretended my ass off to present as neurotypical. A quirky one, most likely, but not ‘alarming’ to neurotypicals, so I must have been pretty good.

Downside of this was that on the way I’ve lost the best part of me and even people who (thought they) knew me very well had no idea that I struggled a bunch on a daily basis. I’ve also hid behind other people’s skills, to try and avoid extra anxiety but still get whatever it was done. Even though this wasn’t always a conscious decision.

An example of this is when years ago my husband and I were walking around town and a young German speaking girl, probably about 12 years old or so, asked us the way. Keep in mind that I, as a Dutch person, have had German lessons in school and my husband has not. It would be most logical that I would help her out. But I couldn’t! I had all the right words in my head. Actually so clearly that I could almost hear them myself, but I lost the ability to talk at that time. My husband however did what he could to talk to the girl in his (as he called it) pigeon German and using the few Dutch words and lots of hand gestures. And I was just standing there, temporarily mute.

That is definitely a disability right there. I now know that this isn’t uncommon in autistic people, but I can tell you, when this happens it makes you feel extremely inadequate.

While I was lying in my bed, having all these thoughts I also thought about my MS. Most people have heard of MS. However some people still confuse it with a muscle/mobility issue which it is not correct. So for clarity:

Multiple sclerosis (MS) is an autoimmune disease. It is a chronic disease where the immune system mistakenly attacks healthy cells in the myelin, the protective sheath that surrounds nerves in the brain and spinal cord. Damage to the myelin sheath interrupts nerve signals from the brain to other parts of the body.

It is highly unpredictable and affects people differently. Some of the most common symptoms include:

• fatigue
• vision problems
• numbness and tingling
• muscle spasms, stiffness and weakness
• mobility problems
• pain
• problems with thinking, learning and planning
• depression and anxiety
• sexual problems
• bladder problems
• bowel problems
• speech and swallowing difficulties

Quite a few of these symptoms I have or had (and therefore might come back during a flare up. You can also see that a lot of these are invisible symptoms, like fatigue, which is a huge one. The amount of times I’ve heard, ‘yes I’m also very tired’ are countless. Being very tired is not the same as being (MS) fatigued. People start to see the difference a little bit now that there’s more awareness of Long Covid, but I don’t even know if that is the same. But fatigue does look to the outside as ‘tired’, so comments like ‘ maybe you should go to bed early or have a nap’ are common. And saying no to this advice looks like you’re just stubborn or don’t want to be better. However, MS fatigue is not necessarily helped by sleep. I can wake up after a night’s sleep and be as fatigued as when I went to sleep. The comments and lack of understanding have kept me from talking to people about me being fatigued.

But in terms of other invisible symptoms, also problems with thinking, learning and planning is a big one. And because MS is so unpredictable it is a really hard one to deal with.

I know that if I’m under any kind of stress, my MS symptoms show and/or become worse. And with ‘any kind of stress’ I mean physical stress (raised body temperature, flu, inflammation etc.), but especially emotional stress. Emotional stress for me also includes stress that I feel through others. Luckily I have learned to distance myself emotionally from people outside of my direct family better than I used to, but if one of my kids is feeling very stressed, then this can and likely will have an affect on my physical well being.

When dealing with invisible symptoms, that are not understood, it feels easier to hide them. The same way as not going anywhere when my legs temporarily wobble in stead of using crutches or a wheelchair (I can’t even think about that! 😱) And this works to a certain extent, but if you then realize that when you keep doing this it affects your health and your overall well being, you know it’s not an option.

However, that means that you have to admit to having these symptoms and potentially having to face explaining your disability at the risk of not being believed and/or taken seriously. And that thought fills me with lots of anxiety!

Maybe it’s because of my own preconceptions about disabled people. Maybe this is why I do not want to be seen as a disabled person. Maybe I am part of the group of people who actually have this toxic preconception that disabled people are worth less. I don’t see myself as one of these people, but maybe this thought is somewhere in my brain. Or I’m just afraid that people will think of me that way – worth less. Or maybe it’s because I’ve spent all my life to strive for perfectionism and don’t feel disability has a place in that. I really don’t know, but I do know (now) that nobody is perfect and that trying to ignore the fact that I am indeed disabled is possibly the biggest flaw I could have.