First I saw my doctor and discussed a change in meds for my ADHD. Then I used earplugs while trying to read in a café but still got a traffic jam from all the noises. Then I was upright for way too long so my POTS hit me and I almost fainted in the grocery store. Then I went home all overwhelmed and tried to calm down. Then I read the posts. Then I cried and started to think about things. Like perception and sensory overload. That my doctor didn’t seem to get how insanely demanding it will be for me to change meds. That just existing around other people is so hard.
I get so tired from spending time with other people, especially away from keyboard. It’s always been like this. I can’t completely pinpoint why, but partly it’s because of too much noise, too many sensations to process. However, there’s something more to it. It’s like I actively have to think about not to play with my necklace, what not to say, what not to do. Like I’m performing. Obviously I’m performing well when I see doctors ant psychologists since they claim my body language and facial expressions are adequate and therefore there’s no need to look deeper into the autism question. What they don’t know is how hard I work for it.
I fill out questionnaires about how I relate to other people. Do I find it hard to understand what other people are feeling? No, I claim. But the truth is, how do I know if I find it harder than other people? I can only compare with myself and no, I don’t find it as hard as I did when I was younger. Do I find it harder than some imaginative generic person? I don’t know.
I know that when I seem cold it’s because I’m overwhelmed. Because other people’s feelings and expressions are poured over me like water from a big bucket.
(As some of you probably have figured out, English isn’t my first language and I haven’t written in English regularly for many years. It’s scary to publish texts with errors and misstakes, but I miss English enough to do it anyway.)
Don’t assume an autistic person knows how their experience differs from others but is just unable to put it to words. A lot of us have spent a lot of time being told we’re not different so much that we discount our own perception in favor of what others say is true, and additionally, it’s really hard to realize that others don’t see or hear or smell or taste or touch or otherwise feel the world as you do. The block might be coming at a far more fundamental level – the level of simply not realizing that not everyone finds bright sunlight more painful than a sprained ankle or finds a crowded room fear-provoking, or what have you. Maybe words aren’t where the breakdown’s happening. Maybe it’s happening at the not-realizing-it’s-not-a-moral-failing level.
One of the more disturbing elements of a bad experiences with health care is that every time my health gets worse, not only do I have to deal with that but also with triggered memories. It’s a heavy reminder om how vulnerable I am. The last couple of days my heart has been hurting, my legs burning with my pain and my temperature has been bouncing up and down. I know that if I had a doctor who could help my find out why this is happening more and more frequently, I could release myself from a lot of worrying and get proper help. But there is no such doctor available. The doctor who diagnosed me with POTS and central sensitization is no longer available and my GP doesn’t know what POTS is and doesn’t have the time to care. Going to the ER during summer chaos is certainly not an option.
Of course, all the memories and the anxiety it brings make my symptoms worse and then I start doubting myself. What if all of this is just in my head? What if the PEM and sensory overloads aren’t really happening? I know this is not the case but every time I’ve been pushed and pressured to keep doing things that are hurting myself while being told that it’s just in my head – it did something to me.