Curious friends and family often ask me what a bad day with systemic mastocytosis (SM) feels like. A bad day can look different for every patient. Symptom flares can range in severity and length and even present in different body systems. This variability and unpredictability can take an emotional toll on a person. Having a bad day with SM is much more than dealing with physical symptoms.
But when it comes to my physical experience of a symptom flare, I’ve come up with a poetic way of describing it. I feel like I want to tear off my seething skin, reach into my body to rub my sore bones, pick off the cotton balls laid over my brain and pull the thumbtack out of my gut — all while my stomach churns in my mouth.
I don’t offer this uncomfortable answer for obvious reasons. Even in writing it, I criticize myself for seeming overly dramatic. But it’s my truest description of what I go through during a symptom flare. What I tell most people is that a bad day feels like the first day of fighting the flu, and I don’t know if it’ll end in a day, a week or a month.
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Because I have a history of idiopathic anaphylactic shock, a symptom flare can become life-threatening, but it’s more common that a flare will cause a sore stomach and acid reflux.
Recognizing a flare is half the battle
I only recently realized how symptom flares affect my thinking and mood. For years preceding my SM diagnosis, I was aware of these cognitive differences; I just didn’t understand why they were happening. I questioned whether my hormones were at play. I even considered the possibility of a surfacing mental illness.
Learn more about SM signs and symptoms
A symptom flare severely impacts my ability to cope with everyday stressors. The contrast is so drastic that I almost feel like I’m living a double life. I also experience social withdrawal, intense irritability, anxiety and spikes of depression. Because I’m known for my calm and collected temperament, I do everything possible to hide away during a flare. I feel incapable of being the person I want to be.
Since my SM diagnosis, I’ve learned that making my life smaller during a symptom flare reduces my need to mask in front of others — an impulse that exhausted me for years.
When I recover from a flare, I’m so thankful for the good days, for the clarity of mind and calmness in my body. I’m grateful for the opportunity to write about this sharp contrast. I hope it validates the experiences of other patients who can relate.
Backed by science
I do a lot of research to better understand SM and symptom flares, bearing in mind that much about this rare disease remains a mystery. But there’s science that backs my experience of symptom flares. It’s called mast cellMast cell A type of white blood cell produced in the bone marrow. They help defend against infections and play a key role in allergic reactions. In SM, mast cells become overactive and build up throughout the body. degranulation.
Patients with SM have an abnormal buildup of mast cells. Mast cell degranulation happens when these mast cells overreact, releasing inflammatory chemicals into surrounding tissues. Mast cells reside in all vascular tissue, which means degranulation can happen in any of our body systems.
Researchers link mast cell patterns to disease severity
Many things can trigger mast cell degranulation: foods, temperature, physical and mental stress, chemicals, fragrances, pain, medication, viruses and hormones. My skin crawling, my bones aching, my GI system rebelling and my mind screaming — all of this can be explained. It comes down to my over-abundant and misbehaving mast cells.
Some questions remain unanswered
I apply this science to my experience of anaphylactic shock, which eventually led to my SM diagnosis. I think about the symptoms I had moments before passing out: flushing, a fast heart rate and such an intense sense of doom that I dialed 911 without hesitation. With no GI distress, swelling, rash or respiratory distress, my anaphylaxisAnaphylaxis A severe allergic reaction that can turn fatal without treatment. Patients with SM are at a higher risk of developing anaphylaxis. highlights SM’s complexity. It makes me wonder if I had a higher amount of mast cells in my cardiovascular system at that time. Or maybe something else triggered the degranulation.
I’ll never know what caused my severe anaphylaxis that day. Testing positive for COVID-19 once I was at the hospital leaves me feeling like the answer is in front of me, but I lack the knowledge to decipher it fully.
A bad day with SM is so much more than its physical toll. SM symptoms can feel nonsensical and make a person doubt herself. I’ve learned that a bad day with SM can feel less heavy if I don’t doubt my symptoms and give my body the grace it needs.
