“When you are young and healthy, it never occurs to you that in a single second your whole life could change.”– Annette Funicelle
“You’re an enigma.”
“Your test results are negative.”
“You don’t have anything wrong with you.”
“Maybe it’s just anxiety.”
These are all of the things doctors from Sloan, UPenn, and every other top-ranked medical professionals have said in regards to my illness. After 1.5 years of pursuing doctor after doctor, diagnosis after diagnosis, medication after medication, it happened.
“Your levels were 11 times that of the normal level.”
After countless hours of research, I had found the one doctor in the entire tri-state area who would simply test me for the disease I thought I had. Everyone told me not to look at the internet for answers, not to self-diagnose myself. Funny thing is, I was the one who found this rare disease. I was the one who found the doctor. I was the one who believed there could be some crazy chance that I have this disease…this disease we now call MCAS.
[MCAS-Mast cell activation syndrome: A disorder that falls under the disease of mastocytosis. Instead of having an increase in mast cells like one does in mastocytosis, the number of mast cells is normal, but there is an accumulation of altered mast cells and/or abnormal release of mast cell mediators (such as histamine). Since mast cells are found everywhere throughout our bodies, this affects every organ system, especially the skin, the gastrointestinal tract, and the cardiovascular and nervous systems.
Essentially, my mast cells don’t behave properly.
When you’re having a reaction/flare, the mast cells are set off by everything from temperature to emotions to food to fragrances to any type of stimuli. This is when the cells are degranulating, as in releasing several mediators (like histamine) at an increased rate, which leads to individual symptoms all the way to anaphylaxis.
They essentially believe everything in the environment to be an allergy, but produce symptoms that one does not even connect to an allergic-like reaction.
Daniel and Pamela Hodge explain the complexity of it so well, “When I think of how to explain mast cell disorders as a disease, the first thing I think of is the fact that it does not follow the rules. It is like playing a board game with a cheater, someone who makes the rules up as they go, or changes the rules in their favor. It is always changing and unpredictable. The only certainty is that it is there and you must be vigilant.”]
I guess I had expected for it to be more climatic. I had envisioned that someone would show up with balloons, champagne, and a congratulations card. I thought I would feel something, anything. Instead, it was just shock.
The relief for someone to finally tell me it was not in my head was so freeing. It took away the thought of everyone thinking I was crazy. To be a psychotherapist and not have people believe that you know yourself and your field well enough to be able to determine whether you have a mental illness or a physical one, was excruciating. It felt like everyone else was so adamant that it was made up that I had started to question myself if they were really right after all because with each negative test, the odds were more and more against me.
Those emotions only lasted so long before anger jumped in. It’s real. This was no longer something in my head. This was no longer something I had imagined. This was no longer something that just casually happened because I was upset or anxious or just didn’t feel well. It wasn’t some virus that was going to take its course. I was diagnosed with a chronic illness. Chronic meaning a long-term, forever kind of thing.
I struggled to share this information with others at first. I felt boxed out of any reaction. I believed that other’s reactions were going to feel like something I should be experiencing myself. The thing is, no one has any concept or experience with what it’s like to be told one’s loved one was diagnosed with something like this.
So people started to respond with encouragement because as a society, that’s what we do. We want to put a band-aid over the problem, make it go away. We want to problem-solve things so that we don’t see someone hurting. Typically this happens due to our own discomfort of not knowing how to be supportive to someone who is in pain. People would say, “You’ll get through this.” They’d say, “At least it isn’t cancer.” They’d say, “At least you have a diagnosis.” To be honest though, it isn’t something I will “get through.” It isn’t just a bump in the road that is going to be smoothed over. Sure, I will learn to adapt to it, but it will never go away. It is here, forever. All of the comparisons to cancer, to other illnesses, became useless. The encouragement from my loved ones just felt more and more isolating.
Instead of sharing in a meaningful way, I would share the facts to those who needed to know. I’d use medical terms. I’d list the things I have to avoid. I’d tell them my test results. I’d never show emotion. I somehow began to feel like I had to be the rock when sharing information in order to protect anyone from feeling forced to have to support me. I lacked faith that someone could actually respond in a way that I greatly needed.
After all, how could someone else possibly grasp the intensity of how a chronic illness impacts a 25-year-old’s life? When you’re young and healthy, you don’t ever anticipate your visions, hopes, and dreams to collide with your new reality filled with doctors, medications, hospitals, and a forever type of sickness. That’s a journey only some of us have been given the hurdle to take.