MECFS Changed My Hobbies
As an autistic spoonie, one of the hardest things to deal with when I got sick was the loss of my hobbies and special interests, from physically impossible tasks like swimming, skiing or climbing a bell tower to mentally impossible ones like coding and math my entire identity was ripped our from under me.
So for autism awareness month (although what we need is autism acceptance!) I decided to post a Venn diagram showing the massive change to my personal identity that MECFS caused and explaining how being autistic has made this change so much more than just a change of hobbies.
Special interests severe many purposes for autistic people. We develop them naturally and they often go hand in hand with hyperfocus. Sometimes this is advantageous as in my super focused coding ability, other times it can be neutral or useful only to me like my large directory of LOTR knowledge and finally it can be harmful when it stops us from pursuing any other activities not part of special interests including necessary paperwork, medical bills, household chores or hygiene.
For me, special interests previously served to
-Give me purpose
-Deliver me outside praise and validation
-Regulate my emotions
-Channel my creativity
-Have sensory experiences I treasure
-Learn deeply about various topics
-Develop skills
-Benefit from "flow" states
And more
But I still have hobbies now right, the red circle is not empty?
While this is true, my special interests are far more limited than pre-illness. A hobby is not automatically a special interest and since getting ill I have often found myself disengaging from hobbies even including my activism the closest thing to an active special interest I still possess. Much of my special interests nowadays consist of knowledge bubbles I built when I was younger and can still share about but rarely add to or skills I cannot practice as they induce PEM.
Post ME my special interests mostly revolve around social topics like ME and disability activism, peer support, and leftism. But while I am passionate about these topics they often feel more obligatory than past interests.
By necessity, I cannot take on special interests that induce my previous levels of hyperfocus. I often struggle with whether these new hobbies are special interests at all, despite still feeling a deep attachment to some.
For me, ME has irreparably changed what it means for me to be autistic. The center of my autistic identity is gone, I am much more disrupted and bothered by sensory sensitivity executive dysfunction and social difficulties. I cannot simply replace people with deep focused work and meaningful creation. Instead, I now rely on relationships to give meaning in my life.
I do not speak for all autistic people. In fact, what this experience has taught me is just how much autistic presentation depends on circumstance. Had I been born chronically ill my relationship to autism would be completely different. Had I never developed ME and Behcet's it would likewise be unrecognizable.
So next time you see an autistic person remember that just as you are not just your brain structure but every way that structure has learned to interact with the world it is given, neither are we. Autism may be a neurodivergent, but we are people, products of circumstance and the world around us. Let's make that world as accepting and caring as possible.
