I’ve gained a recent interest in the world of Mast Cell Disorders from a very personal and judgmental experience. So, as I write this post, or any other related post regarding this topic please understand that by personally addressing this topic is being done so in a manner to shed light on related experiences by those living with Mast Cell and other Allergic Disorders.
For years, I have known something was wrong with how my body responded to certain things including but not limited to: physical or emotional traumas “stressful events”, temperature changes, environmental hazards, viruses or infections, vaccinations, medical procedures, pregnancies, and so on and so forth. However, it wasn’t until my last pregnancy in 2017 that the overwhelming feeling came that something was wrong or could go wrong if the Doctors treated my pregnancy or related symptoms as standard and did not take into full account or consideration my genuine concerns. I had been told in the past I was “anxious” and “anxiety driven’. What I eventually came to learn was that anxiety was just a symptom associated with other related disorders that I had been underdiagnosed with for years.
I can remember some of my related experiences as a child which leads me to believe there has always been a related genetic predisposition to my current diagnosis. Growing up, I would be the last to leave the table after my father cooked meals that would often make me sick to my stomach, literally. Associated G.I. symptoms included vomiting, cramping, nausea, dizziness, constipation or diarrhea, and episodes of syncope. Back then my father took all of this as “behavioral” and labeled it as a sign of disobedience and disrespect, when all the while I was trying to avoid having an anaphylactic reaction to certain foods and preservatives. I would find ways to avoid the physical triggers associated with his meals by stuffing my pockets full of what he cooked, and then immediately asking to go outside and play, (just so I could empty my pocket). Like many other families back then, children didn’t get to leave the table until they finished most of their food. I spent most of my childhood while still under my father’s roof, with my legs and backside covered in welts from iron cords for not “finishing my food.” Of course, this affected how I ate as an adult and contributed to my refusal to force feed any child. Of course, there were other things in the environment that triggered reactions as well. I grew up learning how and when to avoid “triggers”. As a child I also would line up about four of the kitchen chairs together in our bedroom that my three siblings and I shared, as a makeshift bed for myself, to avoid the allergic effects of sleeping on a latex mattress. It’s amazing what children will go through and attempt to overcome and persevere through to survive the negative effects of a misunderstood childhood. What may be even harder to deal with is being misdiagnosed, underdiagnosed, mistreated, misunderstood, and mislabeled into adult and parenthood; especially when your children start showing similar signs and symptoms that you have been able to recognize sooner than others due to what might have always been a related genetic predisposition.
I hope those with “MCAS” or any other related “Allergic” disorders or “Inappropriate” responses yet to be diagnosed will read some of my related stories and feel free to comment and share your own.
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