I never expected to have much in common with the singer Halsey, but after she went public with some of her health journey on Instagram recently, I realized that we are part of an exclusive club.
Like me, Halsey has been diagnosed with mast cell activation syndrome (MCAS), a disease in which the body can have an allergic reaction to anything; Ehlers-Danlos syndrome, a disorder of the connective tissues which can cause pain and dislocations, among other things; and an autonomic nervous system dysfunction, in my case postural orthostatic tachycardia syndrome (POTS), which causes changes in blood pressure, heart rate, and more.
All of these conditions are considered rare, but doctors who treat them think they may be underdiagnosed.
It took me years to get a diagnosis
Halsey wrote that she went to 100,000 doctors and was hospitalized for anaphylaxis a few times before getting a diagnosis, eight years after she started having symptoms. Though it’s an exaggeration, it’s not far from my own experience.
I was officially diagnosed in January 2022, but my symptoms began after a long virus nearly six years ago. I felt like my body was rebelling against me. Of course, I went to the doctor, as many as I could find. Testing for these conditions are challenging, and doctors aren’t familiar with them.
When blood tests came back clear, I was sent home without answers — for years. My story, and Halsey’s, are anything but unique.
After giving birth to my daughter three years ago, my symptoms intensified — a postpartum increase or change in symptoms is common in these conditions — something that Halsey also experienced.
I couldn’t keep living like that
It soon became clear that I couldn’t continue to live with my symptoms. I was so tired that I thought I’d fall asleep driving. I was reacting to so many foods that it seemed like there was nothing I could eat. The shampoo I’d been using for years suddenly gave me hives.
I was searching the internet, begging for answers. I found MCAS, the first piece of the puzzle, on my own and took it to my doctor. She gave me a referral to an allergist. I did my research and found someone in the practice who knew about MCAS. Then I settled in for a long wait until I could get in.
Once in the office, I could have cried with relief. My weird symptoms didn’t seem strange to this doctor. They sounded like what she dealt with daily.
We started a protocol to see if I would improve, even a little. It made a difference. I had a diagnosis.
At that first visit, she mentioned EDs and POTS, since these three conditions are often called “the trifecta” among patients and doctors. If you have one, chances are you have the rest, too.
My doctor helped me put together a team of other doctors who were willing and capable of treating these little-known illnesses. Slowly, I began to improve, finding a complex protocol that worked for me.
My story is becoming a lot less rare, as many people are developing MCAS and POTS and discovering that they have EDs as part of long COVID.
My doctors like to say that with diseases like these, genetics load the gun, but the environment pulls the trigger.
My virus left incurable conditions in its wake. All of us who suffer from these illnesses hope that the research going into long COVID will help people get diagnosed, treated, and able to achieve a greater quality of life without years of being dismissed by doctors.