Pain Stories: Sonya Huber
“Th[e] pain sat warmly on the surface of my hands up to the elbow like evil, pink evening gloves, with a sort of swimming cap clenched on my head… and a nauseating blur in the eyes.”
Sonya Huber in Pain Lady Takes Your Keys and Other Essays from a Nervous System
“at other times the pain was a cold ache at the knuckles, with a frazzle in the stomach and a steady and oblong ache from hip to hip.”
Sonya Huber was 38 years old and midway through a divorce when her pain began. As a newly single mom with a four year old son and a demanding tenure track teaching position, it was a terrible time to develop an autoimmune disorder. She had always been athletic and active with a caffeinated, type A personality and drive. Now her energetic son faced not only his parents’ divorce, but a mother who had gone from chasing him across the yard to barely being able to walk with a cane.
Sonya’s physician prescribed Tramadol, a mild opioid, for her pain and sent her for further evaluation by a specialist, who eventually uncovered its cause—an autoimmune disease known as rheumatoid arthritis, in which the immune system attacks healthy cells, causing painful swelling and tissue damage in the joints or other parts of the body.
“too young and pretty to have rheumatoid arthritis.”
Even with this diagnosis, doctors dismissed Sonya’s pain. A physician in Georgia told her she was too young and pretty to have rheumatoid arthritis. When another told her that she was “taking an awful lot of pain medication” because of the Tramadol, Sonya burned with shame and frustration. “I thought to myself, hey, I didn’t ask for any of this, to be in constant pain. And I’m only taking medication exactly as my doctor prescribed it,” Sonya said, “What’s wrong with that?”
Sonya’s early experiences with the healthcare system left a deep impression. To avoid repeating the same humiliation, she doesn’t take opioids anymore even though they were effective, and instead relies on acupuncture, chiropractic, a TENS unit, and medical marijuana. She spends about $300 a month out-of-pocket to manage her pain.
Sonya still has to lie down in her office between meetings, and is vigilant about staying in and getting a good night’s sleep. “When I sleep, I look like Darth Vader,” she said, “I have a special pillow, a mask, a mouth guard—because sleeping in pain is so hard and so important. Once you fall behind, the pain worsens; it’s a vicious cycle.” “I still have flare ups – days when I’m in a ‘don’t talk to me’ place and I have to lie in bed, which my family understands,” she explains.
“Pain is everywhere… but good care for pain is not.”
Writing a book about her experiences with pain connected Sonya with others who have pain, which made her feel seen. “People without pain don’t have a need to understand it,” Sonya explained. She wishes those people understood that pain is everywhere, that people in pain are all around them. But good care for pain is not. “Even with access to treatment,” Sonya explained, “I still live right on the edge of uncontrollable pain.”
Sonya’s RA makes her immuno-compromised, and she contracted COVID-19.
When the Covid-19 pandemic began, Sonya had to remind friends not to hug her because she is immunocompromised due to her rheumatoid arthritis and at higher risk for infection and complications. “Come on,” they responded, rolling their eyes at her request.
Yet Sonya did contract Covid-19. CT scans revealed that her lungs were filled with small glass-like particles that are characteristic of the disease, and she had ongoing symptoms, such as extreme fatigue and shortness of breath, for more than six months. Although recent scans show that her lung tissue is beginning to heal, they also uncovered a heart issue that may or may not be related to Covid-19. So Sonya is gearing up for yet another round of medical diagnostics. “After years in pain,” she explained, “I know how much effort it is–all the ups and downs of going through the diagnostic process. I can advocate for myself, but it’s so much work. It’s exhausting.”