Asperger's / Autism Toolbox
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One Thing Complicates Another
A Post by Monkey Plierson December 5, 2012
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Asperger's / Autism ToolboxH EO M One Thing Complicates AnotherA Post by Monkey Plierson December 5, 2012 View Blog Listings |
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While beginning to write this, I'm keeping one hand wrapped around a warm mug of tea as much as possible, while typing with the other hand. It's not that I'm so cold. It just feels good to the palm of the hand now affected by what I've recently learned is Dupuytren's (DOO-puh-trinz) disease. The thick cording and knotting that develops over time with this condition shouldn't cause pain. However, in my case, it feels a bit tender. I have fibromyalgia, so I experience my body a bit differently from most folks. I mentioned these two converging issues in my last post. I've been thinking more since then about how my multiple challenges are intertwined. A lot of what's going to be difficult for me about dealing with Dupuytren's has been creating added flavor, as it were, to my life with fibromyalgia and other concerns over the years. As those who've begun to follow my efforts already know, I got diagnosed with Asperger's syndrome this past July. In spite of its being so recently discovered, however, it's something I've had my whole life; so it's been a factor in things right along the way. The first intersection of my various issues I took conscious notice of after my Dupuytren's diagnosis was the way a sensation that would be a minor annoyance to someone else became a major source of distress to me. I have a commonly experienced feeling of tightness in my palm when I open my hand all the way. This is from the tension that's being put on the thickening fibers under the skin as I straighten my fingers. My fibromyalgia sometimes makes this ache a little. But that's actually not the worst of it. In connection with my Asperger's, my heightened physical awareness and sensitivity, hyper-focus, and knowledge of what's going wrong with my hand all combine in those moments to create a rather disturbing emotional response. It's hard not to let this make me increasingly anxious each time it happens. After all, also resulting from my Asperger's, I have those typical on/off emotions that come on strong when the switch gets triggered. And that little twinge in my palm is turning out to be a very effective trigger. After some further thought, I realized the complications went well beyond this. I recalled my relief when I was told by the specialist that one only has Dupuytren's in either the hands or the feet, not both. I sometimes have a bit of pain in my feet, but I couldn't manage, at the time of my examination, to ask the doctor to have a look at them. I don't know why. I only know I often have difficulty telling someone when something is wrong. I might be able to express discomfort or upset to those closest to me. If it's not too serious, I might be able to grumble and gripe in a vague, usually not to serious tone to others beyond that small circle, even grinning and maybe chuckling a bit, the way other people do when they have a minor complaint. I can even state clearly to most people that something's going on if I think I understand it clearly and have a good plan for how to deal with it. But I have a very hard time going to anyone professional if something more troublesome comes up. I also don't do very well when it comes to keeping track of and mentioning whatever concerns I may have besides whatever's the main issue that brought me in to see a professional. I'm guessing, now that I'm considering the matter more carefully, that it's because of poor organization of my thoughts, which affects both my ability to remember everything I might need to bring up and my ability to fit everything into my presentation of my concerns in the time I have with my doctor, combined with a disinclination to trust that I'll be believed and taken seriously if I do speak up. I think I also fear what might result from being taken seriously - getting bad news about diagnosis or treatment. It's challenging enough to push past all this just to make an appointment in the first place (which then includes dealing with the phone, which is not my best means of communication). Anyone can have a little trouble with this stuff. But with Asperger's, you get it big. What was nice for me was that, for the first time, I was able to tell a receptionist about my Asperger's, so I could get help filling out the paperwork associated with a first time visit. I hadn't seen this particular specialist before, so there were several forms to fill out. But the receptionist was first-rate about it! Without any fuss, she took me right into the exam room, for privacy. (This also meant I was getting used to the room by the time the doctor came in, which was helpful.) I got not even the barest hint of attitude about my struggle with what, for others, would surely seem to be such simple stuff. She simply assured me that it was okay to ask for help and then provided it. The doctor was equally outstanding and made everything clear for me, never giving me cause for any embarrassment over my feelings about what she needed to tell me. I was able to express those feelings to her, and I found her to be very understanding, gentle, and compassionate. If I were to change anything about my recent experience, I'd want to make only two improvements that I can think of at the moment. I think I did okay on the intake forms, but I really should've asked the receptionist to slow down a bit. I know I was having some processing delay, and I was only able to ask her to repeat herself once or twice. It's another example of how I have trouble telling others when I'm having a problem and asking for what I need in order to deal with it. I also think I'd have preferred to get the explanation of what my condition was before I was told the name for it, not the other way around. The words "Dupuytren's disease" sounded pretty scary, and I couldn't get past that while listening to her tell me what they meant. Of course, I wouldn't have been happy not being given the name at all, but I think it would've softened the impact of the words to know their meaning first. If I end up going back there again, I may try to remember this. Of course, I could always write it down. But good luck to me later on, when I try to remember that I did so! I began this post by trying to illuminate the way in which the various aspects of my health and personhood mesh and intertwine. Having taken a little turn to mention some good points about my care, I think I'd like to end by noting how vital it is to be able to trust and be comfortable with health care providers. Everyone likes to be trusted. But being able to earn and maintain that trust is another matter. Those who have, in any sphere of my life, I value quite highly. But discussion of that is for another post...
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