Published on 12, July, 2020
So I am diagnosed with ASD, along with a number of other health conditions, including a functional neurological disorder that causes me to have seizures.
Despite my health, I have always battled on and pushed myself to accomplish things and lead a 'normal' life. This can be very hard at times as I am often exhausted from all the effort this takes.
What I struggle with is the lack of acceptance from other people - I have come to terms with my health and weaknesses, or else I would never be able to get on with my life. I mask very well, so much so I can cover the fact I have ASD for the first few times you meet me. I also battle hard to try and operate normally after seizures and other health setbacks as much as I can, even though this is extremely hard for me.
What I have found of other people is that they often fall into two categories; the first group look at me and once learn of my health complications, think you poor thing, you shouldn't be working and you should just accept you are disabled and do nothing with your life other than be dependent on someone. What they fail to realise is first I would never want to give up that easy and accept 'my fate'. This is such a defeatist attitude. Second, they assume I have all the money and people around me to be at my beckons call and support my choice to give in - the reality is very different.
The other group views me as lazy, weak and having no hope - so I need to be pushed and 'fixed' so I can function properly. This has been to the point I have been told to stop stimming when on the verge of a shutdown, meltdown or seizure, or criticized for not being able to 'fix' my problems myself. There has been a lot of change in my workplace recently and this has obviously been very tough for me to handle. Their response was everyone struggles with change so stop singling myself out and instead they will put me on a change management course so this doesn't happen again. I have also been criticised for not making any progress with my health after numerous hospital/doctor appointments and treatments. I won't get better - this is me and I am doing my damnedest to manage it.
What they fail to realise is that despite how they think my ways affect them, it is my life that firstly impacts on me and stops me doing the things I love at times and makes life very hard to live and enjoy.
Nobody would want to be well and healthy as much as I do. So whatever I do I am in the wrong. I am either pushing myself too much or I am not trying hard enough.
Why can't people just accept me as trying my hardest to live my life and that my ability to function will fluctuate, but that I am still the same person with the same needs and ambitions?
It seems that those around you have a very black and white response to your particular life situation which I do understand can cause you frustration.
Masking can be quite a curse as a coping strategy (something that I am very guilty of) in that it can hide your true self and aspirations and also areas of support. I have a tremendous difficulty in voicing my own self in a way that others can interpret in the way I want to be heard. People just see that I’m outwardly doing very well, thank you and let me crack on. Alternatively if they do get close to understanding I get anxious and pull up the bridge up to my inner self so they walk away again.
in an ideal world, what do you want them to see and understand? What do you want them to know and accept. It seems that there needs more balance in your life as I worry that you may burn out