At 25, Rita Maureen Thompson found herself struggling with the physical symptoms of a rare, disabling condition and the psychological trauma as well–which manifested as an obsession to maintain an unhealthy body weight.
I used to celebrate my body with expressive nail polishes like “Not Red-y for Bed” and “Don’t Pretzel my Buttons.” I’d feel proud when I could lift my arabesque leg one inch higher in ballet class. I could spend a late night out chasing vodka shots with gum, and my body would rally for a 9 a.m. HIIT class the next morning. My stride down the sidewalk had a natural grace. I fueled myself with cheap buttered pasta and bananas.
This was my body as I knew it. I didn’t know this era would eventually become my before.
Six years ago when I was 25, my life took a sharp left turn when I was diagnosed with postural orthostatic tachycardia syndrome (POTS). POTS is a type of dysautonomia, or a dysfunction of the autonomic nervous system. While the symptoms associated with POTS can vary, for me the extreme dizziness and racing heart rate of this chronic illness put my life on pause.
I went from an independent twentysomething to being totally dependent on my parents. I had to quit my job, cope with abandoned friendships, and use my mother’s shoulder as a crutch to walk, literally. While it was a safe place to land, my parents’ home in a historic suburban town was far from the urban life I’d built for myself.
I missed the one-and-a-half bedroom Astoria apartment I shared with two Craigslist roommates. I missed the dreams I had for my career as an actor. I missed the trust I had in my body and its ability to let me live my life independently.
Up until that point, I had meticulously crafted a life of friendships, third dates, career goals, and overall independence. With all of that now melted away, I strived to have something reliable I could hold onto. It didn’t matter to me what that something was.
Becoming obsessed with a number
Living with a chronic illness minimized my body to a stack of numbers one on top of the other. Tri-weekly doctor appointments, exams, and labs measured my abnormalities. My once adaptable body was now calling the shots.
At every doctor’s appointment, nurses weighed me. At the peak of my illness, they repetitively reported 109 pounds. Untreated POTS is what initially brought me to 109, because I was constantly nauseous with little appetite. Eating was a discomfort.
As the long-haul effort to treat my illness lagged on, when the beta blockers slowed my heart rate too much and the gabapentin made me nauseous, the reliability of 109 became a comfort through the struggle.
I knew what that number represented–I could see it, feel it, and put it into societal context. In a time when my life was spiraling out of control, anything familiar became my power, including 109.
109 is the number I expect.
109 means I am in control.
Because POTS affects heart rate, I was seeing a cardiologist for testing and treatment. During one visit, he prescribed a steroid. As he moved toward his exit, I whispered to my mother.
“Did he mention a side effect is gaining weight?”
My mother quickly translated my worry to him before he made it out the door. “She has a concern about gaining weight from the medication,” she told him.
He looked puzzled. “Some people do and some people don’t,” he replied. “This will help you start walking more easily, though.”
I wondered if it was even worth trying the medication if it meant gaining pounds. My ability to walk and maintaining my sick weight were equally important to me because both represented survival.
I got lucky. I tried the medication…and kept my weight at 109.
“You need to eat more”
After a year of treatment, I regained strength. But I also unknowingly mapped the trauma associated with my illness into an obsession of 109. To protect myself from becoming so disabled in illness again, I did whatever I could to remain in the comfort of weighing 109 pounds.
I moved back to New York City as soon as I was able to walk around without feeling like passing out. Though I was back to a nannying day job, acting auditions, and general shenanigans, I physically struggled to keep up with the schedule.
Almost two years after my diagnosis, my primary care doctor asked me to create a food log following a round of shaky lab results. I’d worked with this doctor for many years. She always had a poker-faced demeanor, so her request didn’t faze me. Confident in the dedication I’d put into 109, I felt I had nothing to hide. I promptly went to CVS and bought a fresh new agenda book so I could be an A-plus patient and record what I ate every day.
Two hard- boiled eggs for lunch.
Two pieces of toast for dinner.
Proud of my thorough tracking and what I thought was a responsibly protein-rich vegetarian diet, I shared the food log with my doctor. Every bit of food I ate that October was written out neatly. I used my smartest handwriting; I was fully exposed.
The room stilled as she flipped the pages of my food log in slow motion. Her face was expressionless, so I assumed she was impressed by the detail of my notations. We could cross off the concern about my eating habits being an issue. 109 had my back.
She finally looked up and said, “You need to eat more.”
It felt like she told me the sky isn’t blue. I would have been embarrassed if I had understood my off-center relationship to my weight, but I didn’t. I believed my food regime was responsible. I looked in the mirror and saw what I thought I should see. Still not understanding what my doctor was saying, I promptly agreed that I would eat more. As long as I don’t abandon 109 echoed in the back of my mind.
Floating out of the exam room with papers the doctor said to drop off at the front desk, I happened to look down and see a new term listed under “diagnosis”:
Did she just add this or had I not noticed it before? Confusion frustrated me.
In my car after the appointment, I wondered if I should blame myself for unknowingly creating yet another way I didn’t fit in the “healthy” box. I began to beat myself up. Maybe I’m what’s wrong with me. Maybe my poor health is my fault.
I went back to my parents house where I was staying for the weekend. I had to prove to myself that I wasn’t slipping down the slope of an eating disorder like my doctor had alluded to, so I ate everything I could find. I devoured chips and salsa. I crushed a bowl of pasta. I pounded four hard boiled eggs.
My mother, watched me. “I don’t think your doctor meant you have to eat everything in one sitting,” she suggested. We laughed together because it was the only twinkle of comedy in the situation. It was painful to uncover a behavior born from the trauma of developing chronic illness, but it gave me the chance to relearn.
Healing and healthier
Five years later, with my POTS symptoms largely under control, the emotional residue of developing chronic illness hasn’t healed all the way. The difference is, I’m now aware of the unhealthy thoughts I have about my weight. I’m quick to accuse myself of being vain or idiotic to idealize my sick weight, but I know it’s more than that.
When I go to a doctor’s appointment now and get weighed, I face away from where the numbers are displayed and ask the nurse not to tell me my weight. If I don’t know what my weight is; I won’t get caught up in the numbers.
But, I know I’m not 109 anymore. Sometimes I still think you are fat.
Sometimes I still I think don’t eat that or skip this meal.
Sometimes I still think I’d feel safer at 109.
I push through the ugly thoughts and eat the food in front of me 98% of the time. Just like my medical symptoms, my thoughts about eating come in flares. Now I seek security in other ways, like from the love and support of relationships that weathered the storm of my health, and newer relationships I’ve since cultivated.
Chronic illness and the associated trauma are unpredictable. I may never experience life after chronic illness and its emotional wounds, but I have learned to move forward with them. They are a part of my dance.
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