When Mast Cell Activation Syndrome Makes You Feel Cut Off From the World
If I was told a year ago that I would develop a disorder making me allergic to the modern world, I wouldn’t have believed it. And yet, this is my reality today.
Mast cell activation syndrome (MCAS) is a disorder in which the body’s mast cells “overreact.” This means that my mast cells will often interpret harmless stimuli as dangerous threats and release hundreds of chemical mediators in a process known as mast cell degranulation. Some of these mediators include histamine, leukotrienes, cytokines, heparin, prostaglandins, etc. The release of these various mediators results in numerous symptoms that can affect every system of the body. Symptoms often include: nausea, vomiting, abdominal pain, throat swelling, wheezing, congestion, headaches, brain fog, cognitive dysfunction, anxiety, depression, fatigue, hives, rashes, flushing, light-headedness, low blood pressure, high blood pressure, rapid heart rate, uterine cramps, angioedema, and anaphylaxis.
Imagine a world where if you attempt to move beyond a limited list of 15 foods, you experience anaphylaxis. In this world, you are a prisoner in your own home due to strict avoidance of smoke, dust, chemicals, and scented products. Using toiletries and cosmetics results in swelling, headaches, and brain fog. Exercising induces skin rashes and hives. A simple change in barometric pressure results in awful abdominal and joint pain. Temperature changes cause light-headedness and itching. Your own hormones have the power to send you spiraling into anaphylaxis. Likewise, having strong emotions or simply feeling stressed can lead you to experience all of the above.
This is my world. I live in a state of constant vigilance in fear of a potential reaction to what someone else may not think twice about.
Despite everything I’ve listed above, it is not these dreadful symptoms that cause me so much grief and frustration; it is the psychosocial impact of this illness that causes me the most pain.
I am almost 20 years old. For many 20 year olds, they’re off partying with friends, going out to dinners, planning fun outings and road trips, etc. Unfortunately, mast cell activation syndrome has made it far too easy to pop my protective bubble and I’m often unable to participate. The modern world is typically inaccessible for those of us who struggle with mast cell issues or chemical sensitivities. Upon leaving my home, there is no place I can rely on that will be “safe.” The air we breathe is filled with noxious scents from laundry detergents, shampoos, perfumes, deodorants, and other synthetic chemicals. This fact means that social events can easily result in my throat tightening and my tongue swelling. It is not hard to see how this disorder is inherently isolating. In more ways than one, I feel cut off from the world. I walk on eggshells knowing that anything and everything in my environment is a potential threat.
Sometimes it feels like my life has become a long string of excuses surrounding social events. Truthfully, it is exhausting constantly having to advocate for yourself and the position your illness puts you in. Not to mention the fair amount of guilt one feels upon having to repeatedly say no to plans. Many times these “excuses” sound admittedly ridiculous to someone who doesn’t understand the reality of this disorder.
“I can’t come to your bonfire because I can’t be around smoke.”
“I can’t go to the beach because the sun is too strong and heat activates my mast cells.”
“I can’t go in your pool because I can’t tolerate the chlorine.”
“I can’t go to the mall because there are too many scents and potential triggers.”
“I can’t go out to dinner because there’s nothing I can eat at any restaurant.”
Sometimes it’s even as simple as:
“I’d love to hang out but I know if we do x, y, and z, that it will result in a flare that has me homebound for the next week.”
Many times, I feel like my friends must think I’m using MCAS as an excuse to just not hang out with them. This often stems from a major lack of understanding surrounding disability in our society. If someone sees you doing something on one of your “good days” then they automatically expect you to be able to do that activity on any other given day. The example I hear frequently is that of someone who only uses a wheelchair half the time. Just because someone is physically able to walk does not mean that in doing so they aren’t experiencing intense pain or weakness. It is the same with my mast cell disorder. It is so important to understand that I may be able to do something but that does not mean there won’t be consequences for me later. I may be able to go to a hangout without going into anaphylactic shock, but that doesn’t mean I won’t experience headaches, throat swelling, nausea, etc.
Every decision I make now is a calculated risk about what my body may be able to handle that particular day. In a single day I may be able to combat one or two triggers resulting in milder symptoms. However, if I push these boundaries, I start moving into territory that could very well end with me in the ER. Yes, I have my EpiPens and vogmask with me at all times, but it isn’t always worth it to put myself in a position where I’ll be needing them in the first place.
I am so thankful for the friends in my life who understand my limitations and do their best to be inclusive. There are too many people in the chronic illness community who are often “forgotten” by their social circles because they are no longer able to attend events the way they once did. Fighting chronic illness is hard, and it’s even harder when you do it without a support system behind you. I may not be able to participate in social activities in the same way or frequency, but I am truly grateful for the people in my life who have stood by me nonetheless.
Getty Image by HbrH