Excellent, though heartbreaking, post.
This is such a hugely destructive thing that most disabled people have experienced at least once, but more often I think from most or all of the people in our lives. I am no exception.
I, too, knew SJM would heal Chaol, but I never expected a blatant message of willpower curing you.
I have severe Lyme Disease, as well as a few more infections, only some of which we have identified. And my story starts when I was very young.
One of my family members is abusive. But no one acknowledged this to me, and as a young child, I was programmed to turn to my family for safety, so my mind shoved all that trauma into a closet and padlocked it. As I got older, I felt traumatized and identified with abused people, but I didn’t remember anything happening, and still no one put a name to the obvious abuse, so I turned on myself and thought I could not be trusted.
Which was then encouraged by an abusive church I went to in my teens. I was naturally horrible and I could not be trusted to tell truth from fiction, so I knew I had to be overreacting and “attention-seeking.“
Then, the summer after 9th grade, I was bitten by a tick. But I never knew, never saw. Many, many people never get a bulls-eye rash.
Lyme often starts as an upper respiratory infection, but when that happened during a group project at the start of the school year, I didn’t think that it was worth getting to skip out on work. But I really felt like crap, so I asked a teammate if they really needed me there. I didn’t have the words to say, "I’m sick.” So she said no, you don’t get to go home.
Get up. Figures, I was asking for special favors anyway.
After that, I never quite felt 100%. I began getting headaches, having trouble concentrating, and feeling tired all the time. But it came up slowly, so I thought nothing of it. Then I thought it was from depression, and continued to power through my schoolwork.
I remember starting to drive, and as my brain fog and headaches got worse and worse, I began to feel unsafe behind the wheel, and the amount of brainpower I had to use to focus enough to drive safely took everything I had and felt like slow torture.
But my family pushed me to practice driving, and wouldn’t give me an out, even when I tried to speak up and say I had a headache.
And this was just the beginning.
I started experiencing joint pain. I would limp through the hallway. I would limp down the street. But I always did The Most™. I was a perfectionist who took advanced classes and power-walked everywhere and carried around an overly heavy backpack. I pushed myself to the limit, mentally and physically.
I got headaches every day after school. I found it harder and harder to keep up with my schoolwork.
But there was no out. I had to finish school.
I saw multiple doctors, who said there was nothing physically wrong with me. The consensus was that I was “only” depressed.
Get up. Teenage depression isn’t special.
A riding instructor, having run out of helpful things to say when I was terrified and struggling with a terrified, bolting horse, told me, “I know you have it in you to do this. I believe in you."
I shut down, but didn’t get off. I obediently sent the horse forward again and got bucked off, destroying my confidence for years.
Eventually, after I started having suicidal thoughts, my parents sought a schedule change. I dropped my advanced classes.
But I still had to wake up at 5, carry that backpack, and be at school 7-2 every weekday. By that point, although I suppose I had less homework, I still was in "work mode” 24/7. Even if I wasn’t doing schoolwork, I was always thinking about the next school day.
I was terribly burnt out.
I don’t even know how many symptoms I had at that point. I had no idea what I was doing those last months, because it took all I had to just to drag myself through each day. It was a blur of early mornings, heavy loads, and endless concentration; pain, desperation, and exhaustion.
I remember one morning sitting in the school library and seeing everything moving back and forth slightly. I think the school librarian said I didn’t look so good.
But I didn’t pay any mind. I wasn’t sick. I had to get up.
I finally graduated. I took a gap year, and did almost nothing. I recognized that my mind needed to heal, but I still didn’t recognize what my body was telling me–I lumped it in with the depression.
And now the real invalidation begins.
Family and friends pushed me to go to college. I said I wasn’t ready yet, I asked them to trust me. They kept pushing, as if I were simply lazy or directionless or afraid to grow up.
I tried to learn piano, and when the “homework” was too upsetting for my traumatized brain, the teacher just told me a story about how her husband almost gave up piano because it was a lot of work. She didn’t decrease my assignments.
An ex-friend told me I was just laying there and and making excuses to not try.
I saw a counselor, who assumed that my reluctance to drive or go out was because of anxiety. She wanted me to practice and overcome it.
I stopped going to that counselor.
We moved and I had to tell new church acquaintances that I wasn’t going to school or working. What was I doing, then? “Not much,” I replied, uncomfortable with claiming illness, even though I knew depression could be counted as one. They made judgmental sounds, gave me scolding looks, or patted me on the shoulder patronizingly.
My mother, with the best of intentions, pressured me to do chores around the house, and took me out to run errands with her, no matter how much I resisted.
A family member told me I was wasting the best years of my life.
Another tagged me in a post about an old woman going back to college.
I tried to be active as much as I could. I danced, I cooked, I rode, I took up projects.
And made my body sicker and sicker, and was able to do less and less. I took trips to visit family, and by the end of a long one, flying to two different places, I had pushed my body far beyond the brink. I have never felt so wretched. I wanted to die standing in that airport.
But I didn’t show it. This was just my own private battle against depression. (Read: my body.) I stubbornly remained upright and walked out to the car.
My health was never the same.
I tried to work at the stables, but got exhausted on every level within 4 hours. Finally, sitting on my bed with wet hair, too exhausted to move, it hit me.
There was something seriously wrong with my body. I was twenty-one. All my exertions had made me feel better mentally, but drained my body alarmingly.
I got serious about seeking a diagnosis.
And I was told I was depressed.
When I said I wasn’t depressed and that exercise made my body feel worse, not better, I was ignored–as in not even acknowledging I had spoken.
“It’s not normal for a healthy, active young person to be lying around the house all day, wouldn’t you agree?”
“I think you’ll find that if you just be more active, you’ll feel better.”
A previously sympathetic rheumatologist, after having run out of ideas and come across the wildly misconducted PACE trial, told me that I should be more active and try harder, because “studies show,” no matter what my own personal experience was.
When she talked to my mother, she said the word, “Psychosomatic.”
And said I needed to find coping mechanisms.
I stared at the exam table and silently seethed. When I got home, I disillusioned my mother about “psychosomatic” illness.
We prepared to move again. It was draining. My abusive family member, even knowing about my illness, failed to plan around it and put me in dangerous situations. I had to fight for every inch of accommodation.
A family member told me resting in my room all day would just make me worse.
A previously sympathetic riding instructor, upon seeing me doing a slow sitting trot because that was all I could manage, told me to go faster, then proceeded to turn to the rest of the class and say, “You won’t get the results if you don’t put in the work!”
A tendon in my thigh was cramping, but I dared not stop, and kept riding through the pain. For a few days I was afraid I had done permanent damage.
Two neurologists didn’t do anything when I told them about beginning to have migraines.
Today I lie in bed, as I do every day, in pain and foggy-brained, riding out Lyme treatments. I’ve found an extraordinarily attentive and knowledgable doctor (which just means she does her job), and I hope to be cured, but that will be some months from now. I’ve already been in treatment for over a year, and am not even halfway recovered.
I also have not heard the end of “get up.”
A family member continues to push me to go take a walk (“Wouldn’t that be nice?”) and go lift weights and go join a writing group.
A prospective stable told me they could not accommodate my illness by getting my horse ready, because “they want students to learn complete horsemanship.”
I may eventually get scolded for using the wheelchairs and scooters at stores. I’ve had nightmares about that, and constantly question whether I’m actually sick enough.
But Sarah J Maas thinks it’s romantic to make a paralyzed person walk again by finding the "willpower” through love.
