Mast Cell Activation Syndrome

Funny story, I came across an article that I wish I had found a few years ago. I actually wish that it had existed when I first got sick 6 plus years ago. It would have made a hell of a difference in my life.

“When a patient reports massive bloating accompanied by a 15-pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition have made a big difference in terms of quick symptom relief.” stated the Psychology Today website in 2019.

I remember that conversation with my Kidney Doctor, she was the only physician who tackled this complex case head on, and back in 2016/2017 Mast Cell Activation was rarely even discussed, and still hardly recognized as a condition. My condition perplexed all my physicians. If ONLY we knew then, what we know now, I may have not degraded quickly and almost lost my life. However, as I was kindly reminded last night again, I guess I never gave up the fight or gave in, I never stopped searching for answers or doing research, or using my body as a guinea pig. I was either going to get better or die. Those were my only options, and I CHOSE LIFE.

But to read this, reminds me of countless doctors that tried to get me to believe I was in a psychosomatic condition, that it was all in my head, when it was REAL.

When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition and told “its all in your head.” They may be sent home with a prescription for an antidepressant or anti-anxiety medication, which not only is experienced as invalidating but does not address the root cause of their symptoms.” stated the Psychology Today website .

I chose not to buy what those physicians were selling. It wasn’t in my head, and I had to trust myself on that. I chose not to be invalidated. I felt defeated several times, but never did I invalidate myself in my head or resign to believing this is just the way it was going to be. Super bummed yes, but never to the point of being willing just to give up. I sought advice, and information as much as I could hold in my head for short bouts of reading.