A Slow DeclinE
by Lisa Macafe
I wrote A Slow Decline to describe what living with chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME) is like and how chronic health conditions like this are related to autism.
I have had health issues all my life, but they were always things that could be dealt with.
My first brush with the ER (that I remember) was when I was eight years old and got a migraine that no one could stop. I remember crying and everything being terrible. I continued to get migraines regularly until a few years ago when the monthly preventative injection drugs came out (hallelujah!) and now I only get a few a month.
My next foray into medical quandaries was at 16 when I had a ruptured ovarian cyst from PCOS that put me in the hospital at the same time as my dad, who had appendicitis - woo-hoo for family bonding! They had to run a whole lot of tests to figure out what was going on with me, because, apparently, my organs are not in the typical place and they couldn’t find my ovaries. Fun. The cysts still require medication to stop from exploding.
Over the years, I have collected more health issues, as many people do. In addition to PCOS and migraines, I added hypoglycemia, scoliosis, hypothyroidism, fibromyalgia, joint hypermobility, autism, anxiety, depression, and TMJD. These have all been manageable with lifestyle, therapy, and medication.
I think something happened in the last few years though.
My theory is that I have lived most of my life in a near constant state of hyper-vigilance due to fear and anxiety. I have always been autistic, but did not know it until age 37, and always felt “off” from other people. I was isolated, even with other people, and felt like a fraud. I worked very hard as an adult to match how I appeared with what I thought was expected. I kept myself thin, dressed in boring “normal” clothes, kept my hair and makeup “nice”. I patrolled the words coming out of my mouth in fear that my thoughts might disquiet others. I monitored the way my body moved to stop myself from self-stimulating behavior that calmed me but looked “weird” and made people uncomfortable. And I still terrified all the time. No amount of precautions were enough. I still don’t know what I was scared of, but the fear was visceral and real.
Aching fear pervading my life is the main reason I fell so hard into substance use as a young person. The only way to escape the clutching anxiety about everything was to force my brain to slow down using substances. I could get no respite without their help.
Once I had children, everything changed. No more partying, no more erasing myself with forced conformity. I couldn’t do it anymore. I was too tired, and kids gave me a confidence that I never had before - a feeling that I mattered and deserved a place in this world so that I could look after my babies and create space for them to be happy. We have to lead by example, and I wanted to be a good example for them on living as themselves. I am loud about being autistic, dyed my hair pink, and have stopped trying to impress other people so much. It never seemed to work anyways, they seemed to just sense something was “off” about me and assumed nasty things about what it was.
So here I am. Living as authentically as I am able, advocating for others like me, and in a career that I genuinely love (and finally in a full-time position, too)!
So why is my health failing worse than ever?
As far as I can tell, living from age 10 to 37 under chronic stress and fear does damage. It turns out, I cannot continue to “just power through” when I get tired. I need to rest, and now, if I don’t, my body will force a shut down.
Enter chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME). My newest diagnosis and the worst by far. It sounds so innocent - “we all get a little tired every now and then”, right? But this is some crazy effect. I’m too tired to sit up sometimes now. Too tired to operate the electric mobility scooter we bought. Too tired to find words to express what I need.
And then I’ll rest for a while and feel better and forget that I have this thing. I’ll live pretty normally and do just slightly too much and I’m back to feeling decrepit again for a week or so. The doctors don’t have any treatments that will improve things, the recommendation is to rest.
So I live in this cycle of trying to stay in the margins of my energy envelope, but the margins keep unremittingly shrinking as this thing persists.
I used to hike for hours. Fence. Play tennis. Now I can’t even chase my kids on the playground or play competitive video games. So many things are lost to me.
I am trying to think where I can take my kids on vacation this summer that I would be able to enjoy… and I’m fresh out of ideas. It seems like each year I can do a little bit less.
I am hopeful to be able to find a root cause and be able to treat it, but fear my reality is now the slow decline that has permeated my life of late.
And yet, I still feel like myself. I still dream and ponder life’s mysteries. My doctorate program has been a fantastic outlet for me to apply my mind to problems that don’t require a physical solution. I persist.
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.