Due to the rarity of systemic mastocytosis (SM), I am yet to meet a fellow patient in person. With experiencing the loneliness of this disease, I can only imagine the isolation felt in a time before social media. Months before my diagnosis, I had my first experience communicating with SM patients within an online support group. It revealed the complex emotional burden that this disease carries. This burden came not only after an official diagnosis: the struggle to find a diagnosis seemed to bear an even more intense emotional strain.
I stepped through the door of the chronically ill community and to be honest, it scared me at first. Throughout my life I have had experience with people who live with chronic illness, but I had never been immersed in it myself. It is difficult to describe the gravity of being inside of it, as opposed to looking at it from the outside. To a new member it is a strange realm with its own language and etiquette. It makes the catch phrase “if you know, you know” seem profound. I found comfort in the relatable experiences and perspectives shared, but also feared the evident disparity commonly voiced.
Without having much experience communicating with strangers online, I initially felt as though I didn’t belong in this group of people. I have found that the downside to online communication is that the negative voices are louder than the positive ones. I received remarks that were comparing my privileges instead of sending support for my illness. In retrospect, I think that this response may have been a result of my evident inexperience in this new world. But the sudden influence of discouraging messages during a time when I was already confused and desperate made me doubt my own suspicion of SM. I feared becoming one of these people; spending years without answers or validation and possibly never having the satisfaction of proof. Questioning my sanity during this time was the most onerous part of my diagnosis journey.
Empathy through learning
I gained a better understanding of what fuelled this negative reception once I learned of the pitfalls within the diagnosis process of SM; they all come down to a lack of awareness and education about mast cells. Examples of these pitfalls are: a false result from a tryptase blood test due to mishandling, misleading results of a GI scope due to inaccurate antigen staining, and the dreaded medical gaslighting. The combination of a possible misdiagnosis and feeling stigmatized by a medical provider seemed to be common drivers behind the medical mistrust expressed by these patients.
With more interaction, I began to meet SM patients that were discernably knowledgeable about their disease. Their mentorship gave me the confidence to advocate for myself, which led to my diagnosis. I came to the realization that I was going to be communicating with all walks of life on these platforms. By gaining confidence through knowledge, I was able to decipher who I should take advice from and who I should offer advice to.
Being a part of the SM community is like being on the island of misfit toys from the classic Rudolph film; we’re all in this together for being outcasts due to malfunctioning in some way. My initial resistance of becoming a part of this community has evolved into compassion and has taught me that knowledge is power with this disease. Bringing our knowledge together can help a lot of people in many ways. I now feel connection where I admittedly once felt disdain. I now know that that disdain reflected my own insecurity and ignorance.
Connection that reveals opportunity
Not only has community within online platforms helped me navigate this challenging diagnosis, it has also presented opportunities that inspire me to keep learning and help spread awareness. Through information shared online, I learn of conferences held for patients, new developments in research, emerging drug trials, and opportunities to share my voice.
The loneliness felt within SM stems from misunderstanding. In my opinion, having a place to be heard is a critical aspect of disease management. I have found that there is an unnecessary shame that comes with coping with this disease due to it being misunderstood and unknown by the people around me. I have so much gratitude for the patients who share their experiences and I think that we would all agree that those shared experiences bring tremendous comfort during hard times.
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