I have psychosomatic illnesses, and they're quite real.
note: I'm not a doctor or a researcher. I'm talking about my own experiences and I am not downplaying the reality or clinical cause of yours. Psychosomatic disorders are not "anxiety".
CW: murder, suicide
In 2022, I caught a mild case of covid. I had been so careful all summer, and was surprised to test positive because the symptoms were so different than the first time I had it. I had the classic brain fog for the first time, no fever or high heart rate, and other than the brain fog it felt like a cold. I isolated for ten days while my family prepped for my sibling's 500-person over-the-top wedding. I went to my hometown on day 12 after I tested positive, and I felt fine. On the way there, my dad called me to tell me my cousin was missing again - not for the first time. But this time, the police were looking for her. No calls on her cell. No credit card activity. Car and purse found abandoned. All over the news.
We decided not to tell my sibling the day before his wedding. Some relatives from that side of the family came to the (150-person, ridiculous) rehearsal dinner, while others stayed with my aunt who was waiting for word from the police. I comforted my family from that side, who were on their phones and clearly miserable and stressed, while other people asked what was going on. I held the party line: no big deal, so good to see you! Let's pretend nothing is happening!
This worked until my uncle started bawling and ran out of the room. It was all over the news - a body pulled from the marsh. Police in a standoff at a hotel with her ex and their baby and he was armed. I was put in an impossible position of keeping the rest of the family and my sibling from finding out while comforting my relatives who knew. My mom was losing it trying to keep this event running. People were crying outside. But I did the "right" thing - I held the party line when people asked me. "Oh, we have a relative in the hospital and we're worried."
I didn't sleep that night. I didn't cry. I was just numb. The next day, the members of that side of the family didn't come to the wedding after the body had been identified as my cousin and the killer handed the baby to police before taking his own life. The rest of us just fucking carried on keeping my sibling from knowing.
I'm a people pleaser, so I'm use to compartmentalizing my feelings to help others. But this extreme form of compartmentalization and trauma immediately after a covid infection served as a sensitizing event that led to the worst five months of my life.
As soon as I started driving home, the brain fog hit me worse than it had ever been. My arms were numb. I had horrible chest pain. The next day at work, I had to think about my feet pretty hard to get one foot in front of the other. The parts of my brain that did that automatically just didn't seem to be working. I was freaked out but made it through the day. Then, walking to the parking garage, I had to sit down on the sidewalk after I almost fell. I felt like I was having a stroke, but I also couldn't afford an ER bill if I wasn't sure. I eventually was able to get in my car and drive home, but I was terrified about my feet on the pedals the whole time. Every sound was so LOUD.
I tried working the next day, which was stupid. I was ok driving, I could walk with a lot of thought and effort, but I couldn't separate two pieces of paper with my fingers. I was an art teacher, this was not good. After ten minutes of no finger control, my legs started failing on me. My spouse picked me up. I could barely walk the next two weeks. My GP had seen this before a few times recently, and after some bloodwork and tests came back normal she said "post-viral. It will go away in weeks or months. You'll get your legs back."
It ended up being 5 months of this. I eventually could walk, but barely. I could hold a coffee cup with both hands with a lot of thought. I had a few good hours each day. I managed to drive again after a couple weeks, but it took an alarming amount of focus and some times I needed to pull over and rest if my feet or hands began losing sensation. My work was not understanding at all - "Covid doesn't do any of that, and your tests are normal. Sounds like anxiety." I would teach a class sitting down, quietly, and my kids were so good. They knew I was broken. They were quieter, they were well behaved, they were honestly pretty freaked out since I was a really dynamic fun teacher. I slept under my art room tables between classes where nobody could see me. I barely finished out the year and had to quit. I was treated like I was kind of crazy, I don't think out of malice but just poor understanding.
I would improve, plateau, regress. I was on r/covidlonghaulers incessantly. I took so many supplements. I tried to get in with specialists and hit years long waitlists. I was so socially cut off and lonely in addition to just having a failing body. Each day was a new post on the subreddit to say "nobody will ever recover from this, we're doomed".
After about four months from onset, I tried low dose naltrexone. It's a drug used off label for neuroinflammation, and one of the many, many theories about long covid was that it was inflammation run amuck. After a week of trying different doses, I learned that A) there was no way in hell I could take this drug - the fatigue it gave me at the most minute dose was double what long covid was giving me and B) all my other symptoms - brain fog, poor motor control, chest pain - were totally gone.
It was a turning point for me. So many people in the r/covidlonghaulers subreddit back in 2022 were desperately awaiting some kind of magic micro-clot-killing pill, or going to hyperbaric oxygen chambers, or trying to get doctors to authorize IVIG. But they weren't really getting better. I wanted to deal with the inflammation in a way my body could tolerate.
I stumbled upon r/longhaulersrecovery. I started to only read recovery stories from people who were mostly recovered. I started reading about all the woo woo, non-peer-reviewed things people were doing - paying for brain training programs, meditating, doing somatic practices, talking about the vagus nerve. I am generally pretty allergic to this kind of stuff. I'm a huge skeptic of snake oil, and man is there snake oil in the long covid space. But a lot of people were just following random youtube videos doing breathing practices and talking about the parasympathetic nervous system and it's relation to inflammation and sharing papers about that. I learned how the amygdala can send off threat signals long after the threat has left, and how trauma affects the body.
I started to - slowly and skeptically - accept that yes, my symptoms were real in my body, but that they were coming from my brain and a kind of trauma that was not the anxiety I know too well. There was not much structurally wrong with me. I cut sugar for good measure, and between breathing exercises, meditation, polyvagal exercises (I still have big doubts about allll the polyvagal theory stuff), goofy-to-me mantras like "I am safe, my body is fine" I slowly started to recover. My nervous system would be a little more regulated and my inflammation was easing.
Unfortunately, after a couple months of slowly getting my life back, I got new, weird, inflammatory symptoms. Horrible headaches. Then pelvic pain. After any kind of infection, my infection would be cured but the inflammation would continue for months and sometimes require steroids. Some doctors were less covid-aware and baffled at my inflammation.
I am currently on month 4 of off-and-on non-allergic rhinitis. It's like having a sinus infection with no infection and no allergy and horrible fatigue. Not shockingly, it started right after the inauguration when I went completely numb through hundreds of executive orders, bought a house in a blue state, and frantically got our shit together to move to somewhere safe. For months, my last immunologist and I pursued this new illness as a stubborn sinus infection with antibiotics. My new immunologist at Johns Hopkins, after hearing about my history with these weird inflammatory events, thinks it's a new manifestation of a disregulated nervous system from long covid. NAR is often the result of an overactive nerve in the back of my sinuses, and the first line of treatment is steroids, saline rinses, and stress reduction. I am getting better, slowly and not in a straight line.
I don't know if the inflammatory monkey will ever be off my back as I finish year three post infection. My immunologist is hopeful that it will.
What I am sure of is that my psychosomatic illnesses are caused by trauma and a messed up amygdala. And they are extremely real. They are not anxiety. There is unlikely to be a pill for this beyond steroids and nervous system regulation, and that second bit is harder and harder to achieve in this fresh hell. It is wild that my brain and nerves (and political hell) are currently capable of producing the copious and gross amount of very real snot, headaches, and fatigue I've been living with for months.
I work to craft a life centered around staying as regulated as I can. My past self would laugh at how woo-woo all of this sounds, but I know laughing really hard with old friends, swimming, baths, meditation, deep breaths, and shutting off the outside world as needed are the only path forward to physical health for me. I share this because if this hadn't happened to me, I don't know if I would necessarily believe it if it came from someone else.