The pain thing is a weird one for me. I am either overly sensitive and feel pain very hard or I don’t feel it at all until the next day. I can’t tell you how many times in my life and how often it happens where I wake up and have a pretty serious scratch or cut or bruise and I have absolutely no idea how it happened. None. (I also deal with a wacky depth perception thing so I’m constantly running into things. The running joke is my name “Anne” means “grace or graceful”. I am in no way graceful. I physically clunk around in life just grateful I weirdly haven’t broken any bones.) When I do feel pain it’s because it’s really very serious and then it’s mind numbing it hurts so bad. There is no middle way with pain. It’s always been something that confuses and embarrasses me in moments. Mostly because as an adult…the expectations to just deal with it are weirdly expected of people. To not make a sound when you are in pain is also a thing I have never understood. Don’t make a big deal. Stop being a baby. You’re being dramatic. All can be said at the same time as “why didn’t you say something”..how long have you just been living with this?”..or “you need to go have that looked at NOW” to me and has.
I never weirdly know WHEN something is not normal and needs to be addressed by a professional because of the confusing way I experience pain and the expectations to “be an adult” about pain. Or simply because I’m a woman and for some reason these things mustn’t be discussed. (Or even researched.) I have tried in the past to talk about it on social media because I actually genuinely need some kind of reference to know if this thing I’m feeling is serious or what. This mostly doesn’t work and I end up more confused. I have tried seeing drs for a lot of different things and this also can not only be confusing but absolutely exhausting to me. I’ve come to hate going to a dr. I hate the pain scale question so much. I really REALLY believe (know that I know I am autistic) that this pain scale question needs to somehow be changed to accommodate autistic humans because I honestly either don’t say exactly the amount of pain I’m feeling because I’m not feeling that much pain in the moment I’m being asked. (I’m very literal and very present in my thinking so remember that in this context.) Or I honestly don’t know what number to say to explain how much I’m feeling. I’ve learned to lie in these moments and my go to is “8”. Just say “8”. Not too much not to little..enough to justify why I’m in this dr office at the moment. Honestly..I am well aware it’s such a very simple thing to do..and their lies the shame and embarrassment that as an adult I can’t even accurately describe the amount of pain I am feeling. And this is just the very start of a dr visit. This is how it starts. This alone can make my anxiety shoot up and then come the questions about what exactly is wrong. I’ve learned to write it down. I have to. My brain is in anxious mode and the questions I’m being asked feel like they are being asked from above an opening of a well and I am at the bottom being asked them. But wait…this isn’t the normal dr you have had in the past. Cue the new guy/gal anxiety..mistrust..uncomfortable brain freeze. What was my name again?
There’s much more to it for me than simply going to the dr. It’s a lot for me. It’s very hard to even think in this sort of situation and really tell a Dr everything they might need to know to have a direction. The lights in a clinic are always florescent. Always. Have I mentioned or talked about lights yet and how they affect me? How they make me extremely uncomfortable (itchy ready to crawl out of my skin..maybe electric feeling) and also cause my brain to freeze? Oh ya. There are always bad lights in a clinic. Always. The one and only time I was in a dr office where paper was purposely put over the lights to chill them out …my 50 yrs on this earth…was when I was diagnosed with ASD. It’s the first thing I noticed when I walked into the room and the moment I knew I had found the right dr to do my assessment. I’m seriously smiling right now just thinking about it. It said SO MUCH to me. Finally someone gets it. Finally I don’t have to feel those things on top of my trying to explain my pain and struggle. I can just be and think. I am telling you…and I will keep telling you and anyone who will listen…being autistic is so deeply complicated and made worse by trying to exist in a world that absolutely is not created for us. The daily struggle is real. I and many like me are not crazy. We are not just imagining what we feel. And it’s a hell of a lot worse when you don’t understand why you feel these things the majority of your life. I had NO IDEA why I didn’t like florescent or too bright light..I just knew I hated them. And the only way you can justify any of it is to tell yourself what you have always been told if you dare to mention it to a neurotypical human…you just need to chill out. You just need to try harder. You’re being overly sensitive. As if being overly sensitive is a bad thing. A thing you must suppress and remove. Remove your brain, yo. Bucker up and just get through it. The constant internal voice..my own voice was telling me to just knock it off and get over it. Years of this. Except I didn’t. I couldn’t. I imagine a huge storehouse in my mind of things to “just get over it” stored inside with no place to go..just sitting there in their feels with no explanation until now. Waiting to be unpacked and sorted through. If you want a mental picture of what it feels like to be diagnosed as autistic as an adult..that would be it. Excuse me if I talk about it a little too much. I have years to unpack. Years. What are your personal self help near future plans? It’s not a contest but I fucking win.
A lot of the time when I do finally make the decision to see a dr…I’m also seeing a very overworked dr. I can feel their tired. I can sense that they don’t remember me or what my history is. They look at their computer screen and ask me the same questions they asked last time I was there. I don’t feel heard. I feel overwhelmed trying to explain the impossible all over again. I should have brought my original notes. Why didn’t I just keep them in my purse for fucks sake? Another blood test. Sure why not. Maybe this time the problem will magically show up in my blood work.
And so on and so forth. This is how it goes. I never really get answers from a medical clinic. Never have. If I do make the decision to go it’s because I’m in serious mode and just don’t know what else to do. The majority of what I’ve found to help myself has been in my own research and my own experimentation on myself with different natural solutions. I am on no medication. When I have tried to be I am weirdly (again) super sensitive to meds or they just cause more new symptoms than feels worth relieving the original symptoms. Not that I’ve had a lot of things going on and I’m generally healthy. All major tests on my heart..lungs…always come back that I’m healthy. This ends up confusing me more because I know I’m not imagining what I feel when I do actually feel it and I know how much it takes for my even seeing a dr to begin with. Over the years I’ve also learned drs do not in fact know everything. And they guess too. And they flat out lie. I discovered this once with my first bout of frozen shoulder. After getting a shot into the infected area I arrived home and read the drs comments admitting he couldn’t actually get the needle into the affected area to treat. So he basically pretended to inject me with the medication I needed to relieve the pain I felt. How disappointing that was to me. It took so much for me to go through all that and to find out my dr couldn’t tell me this..maybe was hoping for a placebo affect..but he did not tell me the information I needed to perhaps make the decision to go see a different dr..(with a sharper needle?) was really devastating to me beyond any logic of what happened and how I think. It was one of many reasons why my first option is never to go to a dr. It’s just too much. It’s really a toss up to go and rarely do I find a dr who understands me or I am even capable of explaining myself to. Just a clusterfuck almost every time.
I’ve learned to talk to people instead if I really need to. I’ve learned a lot of the time…nurse friends know a hell of a lot more about what to do and understanding my symptoms than any drs I’ve paid to take a look at me in their painfully bright exam rooms. Why wouldn’t I just resort to trying to figure it out on my own?
I wonder now if this is a common theme within the autistic community. And especially with women. I fear sometimes that my irregular way of feeling pain or even trying to explain what I feel might end up being the final straw and it will be too late for medical help. I think about that one often. A lot of times early detection is key and a deciding factor. Why I began making a point to just have a regular check up yearly now. I’m 50 now. I know I’m autistic now. I need to take care of myself best I can. Maybe I won’t see the day where my type of neurodivergent brain is catered to in the way I need..in a way that works and makes sense to me..but god will I keep talking about it with the hope that someday it will be for the people who come after me. Try to shut me up about it now that I know. Try. I can’t and I won’t. I have a warehouse full of reasons why I simply can not continue to look the other way about this.