Every day is a struggle. Systemic mastocytosis (SM) creeps into every facet of your life. It doesn’t matter if you “do everything right,” take your medication, rest, and stay away from foods that cause reactions, there is no guarantee that you won’t have a reaction. I always say, “I don’t wish anyone to walk in my shoes.”
When I thought about that statement and realized that maybe if the doctors who blew me off diagnosed me with a milk allergy or anxiety, or suggested I speak to a psychiatrist, perhaps if they walked in my shoes for a day, they would have taken the time to hear me, to listen to what my daily life is like. Maybe instead of blowing off the idea of looking at the daily diary I kept of my symptoms that sat on their desks, they could have shortened my 9-year path to a diagnosis.
Everyone’s symptoms are different, yet share similar themes. Food, temperature changes, heat, scents, and vibrations are my top contenders for bringing on symptoms. So, each day is an adventure. I had an episode a few weeks ago and it scared the hell out of me, to put it lightly.
So, doctor X, please take a walk in my shoes. I want you to put yourself in my shoes for just one episode, and when someone walks into your office with unexplained symptoms, you can remember how it felt to walk in my shoes. Give that person your undivided attention. If they bring you something to review, review it, and try to figure out what is making them so ill and affecting everything in their lives and their loved ones’ lives.
Read more about how SM is diagnosed
Leaving the house with my spouse for a weekend drive or doing errands, I’m worrying if a pothole will jerk the car and cause me to go into an “episode.” Losing the ability to articulate my words, feeling an overwhelming sense of exhaustion, and fighting the urge to fall asleep, almost the feeling of being on the brink of passing out, but that feeling lingers. Imagine the stress of that in every car ride.
Today, your ride out was a success; you did the first part of the trip without an episode. Imagine you stopped at a restaurant neither of you had been to before and you see all the delicious food you can’t eat. You can have a salad (a safe food) and chicken tenders (a safe food). While waiting for your food, you take your meds that help with the stomach pains and distention you know is coming with that first bite.
The food arrives. Imagine you are having a great conversation and enjoying the day with no major symptoms. The sun is shining. You continue to eat your salad, drink your water, and decide to taste your chicken by taking a small, nickel-sized bite. As you listen to your spouse, you realize the sunlight starts glaring into your eyes; it feels like someone is turning up the light so much that it hurts your eyes, so much so that you must close them.
You feel the guilt building that you’re going to ruin another good day, and you really don’t want to. So, you take another bite of your salad and try to focus on the conversation. You take a second bite of the chicken, and within seconds, your heart starts pounding. It’s racing and feels erratic; you feel the blood racing through your veins in your head. It overtakes anything you can hear. Your cheeks start to flush, the heat sets in, and you feel as if someone is burning your cheeks from the inside out with a lighter. Panic sets in, and you think your heart will explode. You can’t articulate your thoughts, the words you want to say are stuck in the racing thoughts of what to do, and you’re in the middle of a restaurant trying to enjoy your time with your spouse.
Read more about SM complications
In your scrambled thoughts, you remember your epinephrine injector and your meds. You want to say, I need my medication, and you are trying to articulate the words to your spouse to get the medication you left in the car. You can’t get the words out; they get lost in chaos in your head and it takes everything you have to speak. Your amazing, supportive spouse gets you your meds.
You’re in the middle of the restaurant, in what feels like a panic attack on steroids times a thousand, with an epinephrine injector in hand, working on your breathing to slow down your heart. Your stomach pains start, the distension of the food causing abdominal issues, and you have to make your way to the bathroom. The overwhelming feelings take hold, and you start crying, letting the fear go with each tear.
Once you reach the bathroom, you get hysterical for so many reasons. The scare of the episode, the overwhelming guilt you feel, the pain in your stomach, the exhaustion you know is coming, and the joint and body pain that follows this type of reaction.
All of this happened within about 25 minutes, yet as I sit here writing and experiencing it all over again, it felt like hours then and now.
How would you feel if you dealt with these symptoms day in and day out for years, waiting weeks or even months for an appointment to discuss your symptoms with a specialist, to see if someone can figure out why your body does what it does, having the doctor dismiss your journals that clearly show what is happening to you on a daily basis? To walk out feeling defeated, to be told you need to talk to a psychologist, or, better yet, you are allergic to milk.
