This summer, I was diagnosed with two rare diseases within a month. I faced rapid deterioration of my body, not knowing if I would ever improve. For one of the conditions, I exhibited symptoms my entire life, but the newer disease compounded those and made my life completely unmanageable. I faced a dark cloud of depression and continuously calculated how long my body would last at its current rate of decline. Since it was new, I didn’t know that what I was experiencing was a flare-up. I thought it was the end of life as I knew it.
I was diagnosed with idiopathic intracranial hypertension (IIH) which led to debilitating headaches and temporary loss of vision in one of my eyes. Of course, at the time, I didn’t know that this vision loss was temporary. It was terrifying. I had daily headaches that were worse when I was lying down, making sleep nearly impossible.
The side effects from the medications for IIH gave clues to another condition that I was living with: Ehlers-Danlos syndrome. Suddenly the lightheadedness I have always felt when moving around had intensified. Through a lot of self-advocacy, I received the appropriate diagnoses and proper medication management. I was hopeful that my quality of life would improve.
Unfortunately, it didn’t immediately get better. I began using a mobility device. I was deeply depressed. I felt isolated and alone. I didn’t know how to cope.
Somehow, I began to recover. I was wary of this at first. I wondered if I had exaggerated the severity of my symptoms and was finally coming to my senses. I knew this wasn’t the case, but I still doubted my experiences. The treatments were working. I didn’t have to use my mobility device anymore.
I got back to my previous lifestyle, though still had some limitations. With intensive physical therapy, I started walking longer distances without my walker. I felt on top of the world. I had conquered this. Maybe these diagnoses had been wrong, or maybe I am special. Maybe “mind over matter” really is a thing. I stopped living in reality of my situation and chose to believe that I had feigned my disability.
But then it happened. My headaches came back. My overall pain got worse. My postural orthostatic tachycardia syndrome (POTS) was exacerbated by the medication changes. Fainting more frequently meant that suddenly more joints were dislocating during falls. All of a sudden, my life was back to being a person frustrated with the lack of accessibility in the world. I had to start using my walker again.
At first, I was devastated. I thought I had gotten better and had a superhuman genome that started producing sufficient collagen. I thought I was the exception to the rest of the people living with these conditions.
The comments from folks in my life are even harder to deal with than my personal expectations. “I’m so glad you’re feeling better” has been replaced by “Why are you using your walker again? I thought you were cured?” These questions and comments seeped into my subconscious. Despite intellectually knowing I live with chronic rare diseases, I want to emotionally believe they can be cured with the medical treatments currently available.
This is simply not true for me.
Flare-ups are part of my life, and I am learning to accept this. I also find that I can be thankful for days or weeks with fewer symptoms. I am full of gratitude that my flare-ups don’t last forever, but I always wonder if this will be the flare-up that doesn’t end.
If you have a rare disease and have flare-ups, please remember that you’re not alone in hoping you’re completely cured. Our minds play powerful tricks on us. It is scary not knowing when symptoms will return, and it may feel like it’s hard to make any long-term plans in case a flare-up suddenly begins.
As folks who have flare-ups, we need to believe our symptoms and not immediately discredit their existence.
We must validate our experiences while staying in tune with our expectations of our bodies.
The future is unknown for everybody, but it feels a bit more unpredictable for people with chronic rare diseases.
We can be scared of future flare-ups, yet still live life one day at a time.
We can respect our bodies and not let our rare diseases dictate our futures as best as we can.