Sunday, February 26, 2017

Chronic Pain and Autism

I know that I have mentioned it a time or two (or more lol) that I have a few different chronic illnesses that cause me pain of varying degrees almost daily. It's something that I have been dealing with for awhile now. How long, I can't tell you. I can't tell you because I don't really know. See the thing is with the way my brain sorts out pain signals, and how my body responds to them I am finding out isn't quite "normal". Yeah, I know that no one is "normal". What I mean by that is that my sensory perception is different that a typical person's due to being autistic.Throw into this mix the fact that I didn't always have a very responsive family that took me very seriously, or made my well being a priority on any kind of consistent basis, and we have a person that is all over the place in terms of how I experience, report, and explain physical pain to anyone.

Most of the time from what I can tell, I tend to not notice pain a whole lot until it's fairly high on the scale. However, once I do notice it, I feel it like anyone else. It hurts like it does for everyone. At this time I might not realize that I can do anything to alleviate the pain other than a usual Tylenol, or something. In other words, it's unlikely that the kind of pain that would make others call the doctor would prompt me to do so, unless it persisted over a period of days. I don't know why this is so. I had an experience a few months ago where I had seen one of the doctors that I see for one of the conditions that I have where he remarked that I am doing okay, and such,and such treatment was not for me. He made the comment that the treatment was for people who's condition was not under control, and was on pain meds, and doing other things.

I didn't know what to say. It's not like he asked me to say anything, and yet I knew his assumptions were so wrong. I didn't even know I could ask for pain meds from him. He never offered. I didn't know what the protocol was. Was I in some very severe pain at times? Yes. I am not a squeaky wheel. Much of the time it does not even occur to me that the option to be one even exists. I literally don't think about it.

With my regular doctor I have actually disclosed my Asperger diagnosis so that they might be aware of my difficulties in communicating. It was my hopes that in doing so they might understand me a little better, and understand that when I am having physical issues I may not be able to always tell them what I need to, and that they might have to ask extra questions to investigate. I don't think it has worked. I'm not quite sure what would. When the doctor asked me a couple days ago if I needed any pain meds for my migraines I said no, and that I was fine. I have no idea why I said that, because it is not true. If I am asked a question I am not anticipating I will fall back to my standard answer which is to say that I am fine. I am most definitely not fine! I could have really used those pain meds on bad pain days.

I'm still trying to think of ways to be a better self-advocate. This is something that has become a big hurdle in my life, and isn't going away. Self care is important, especially for caregiver, and a big part of self care is meeting my own medical needs in a timely manner. I just have to figure out how to work around my sensory system, and executive functioning issues to improve on this area.


  1. This really resonates. I don't "speak up" or even to myself acknowledge pain (hunger, etc) until it's quite severe. What can we do to better help ourselves?
    Working on it.
    Thanks and love,
    Full Spectrum Mama

    1. It's tough, isn't it? I'm doing better at delegating tasks, and being more proactive in my regular tasks of everyday life, because I've been left with not much choice. Beans is a really active guy, and sometimes I've found I can't do it all, but navigating medical stuff? I just don't know! Working on it, too! :)


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