By David Tuller, DrPH
Three years ago, The New York Times‘ popular Modern Love column published a beautifully written tear-jerker by Jamison Hill–a former bodybuilder with ME. The column, “Love Means Never Having to Say…Anything,” described in tender prose how two people with debilitating chronic illness were able to find and nurture a very special love. It was later selected for oral treatment by Boston’s WBUR radio and read by Pedro Pascal. (I’ve never watched Game of Thrones or The Mandalorian, so I’d never heard of him before, but I’m likely an outlier.)
Anyway, last month Inkshares published Hill’s memoir, When Force Meets Fate: A Mission to Solve an Invisible Illness. Below is a short excerpt. I’m sure many patients will relate to the experience described.
The Only One Rattled
December 15, 2010
It’s been more than two weeks since I got sick, and my health hasn’t improved. Pain, weakness, and nausea are the most persistent symptoms, but the others aren’t much better. My skin is clammy, and I frequently have chills. At least a couple times a day, I feel like I’m either going to puke or pass out. That’s usually when I get short of breath, dizzy, disoriented, and my heart rate soars.
Dr. Gretchen, my general practitioner, a short, middle-aged woman with dark hair and remarkably straight posture, has yet to figure out why any of this has happened. I went to see her, but she didn’t have a conclusive answer for my poor health, and she expressed some skepticism about my symptoms. It probably didn’t help that I told her I sometimes have flashbacks and imagine car crashes while I’m driving. Now she seems to think that whatever is afflicting me is psychological, that my mind has created my illness, as if I can not only imagine car accidents but also entire illnesses. I don’t think it’s caused by my imagination though. I think it’s caused by something pathogenic, something sophisticated and complex, something that’s going to take lab tests to detect. It feels like I have a virus or bacterial illness, not something that my mind triggered.
When I mentioned this to Dr. Gretchen, she wavered a bit, but like the urgent care doctor, she still suggested that my symptoms could be caused by anxiety and depression from the car accident. I told her that I don’t have depression but I do get anxiety, though working out usually makes me feel better. I also told the doctor that, in the year and a half since that fateful day on the Napa River Bridge, I’ve seen a therapist and participated in a support group. The trauma from the car accident is something I still struggle with, but I don’t think my illness was caused by it. My current symptoms feel different than the anxiety I’ve experienced. I have never had a panic attack or flashback that has caused such profound weakness or made the lymph nodes on my neck tender to the touch and swollen to the size of large marbles. Anxiety has never given me a persistent fever and a strawberry-like rash covering my tongue.
I told Dr. Gretchen about these physical symptoms, but she seemed unconcerned. Her solution was to prescribe me an antidepressant medication, which she said works for anxiety too. She did do a blood draw and urine test to check for viruses, bacterial infections, and other physical illnesses, but I won’t get the results for a couple weeks. I also told Dr. Gretchen that my heart rate feels especially abnormal during exercise, so she let me borrow a wearable EKG device called a Holter monitor. I’m going to use it during my next workout, in case exercise is triggering my illness.
I’m a little hesitant to wear the Holter monitor to the gym because I don’t want to look weak in front of Keith and Tony and my other bodybuilding friends, but it’s probably too late for that. I’ve already tried to work out twice this week, and each time I either had to stop prematurely or I barely finished and felt horrible afterward.
The more I try to exercise, the more obvious it is that I’m sick. The other day at the gym, I was too exhausted to lift weights, so I just sat and slowly pedaled on a recumbent bike. I tried my best to make it a good workout, but it was impossible. My body was too weak and tired. It flared up with pain, and I became dizzy and disoriented. It didn’t help that when I looked over to the bike next to mine, there was an elderly man, prob- ably a professor nearing retirement, pedaling much faster than me. He looked how I felt, frail and pale, but he was pedaling fast, smiling, and rocking out to his headphones as I struggled to pedal at all, grimacing and listening to the unsettlingly loud beat of my heart pounding through my head.
The workout lasted ten minutes, then I went home, fell asleep on the couch for three hours, woke up, ate some food, and fell back asleep until morning.