One of the most frustrating things with Mast Cell Activation Syndrome (MCAS) is getting an actual diagnosis. The condition mimics so many other illnesses and conditions that it fakes out the patient, and even more so, the doctor(s). Sadly, some doctors, without the ability to make a diagnosis of what is wrong with a patient, will say “maybe it’s all in your head.”
I heard those words from various doctors when I was attempting to get diagnosed with what was wrong with me. It took me 5 years of suffering before I finally got a diagnosis, and that was 10 years ago. Once I did get a diagnosis, I would still hear variations of it. And it was very disheartening.
I saw a Chiropractor for a few years, who said to me once, “I should have someone sneak a new food into your meal. I’ll bet you’d be fine eating it.” I was mad and shocked that she would insinuate that the severe gut issues I was experiencing was caused by something I was making up in my head or by anxiety. She knew that I was seriously ill, and eating only 4 different foods. At the time, I knew that I was having reactions to trace amounts of foods (and chemicals). I had to be careful of pots that weren’t thoroughly cleaned, or a knife put into my vegetable oil based “butter” that cross contaminated it. Right around that time, I had awakened in the middle of the night at least twice feeling as if I couldn’t breathe. I finally found the source – my mouth guard I wore overnight. I had not thoroughly cleaned my mouth guard of the cleaning chemicals I had used. It’s frightening to awaken in the middle of such a severe reaction, and it taught me to be much more careful. It also taught me that trace contact with items could be severely affecting me. My body was really amped up, and I needed to be much more careful. I knew that this chiropractor wasn’t the right one for me anymore, and chose to see a new practitioner who honored the experiences I was having, and who knew that my symptoms weren’t all in my head!
Then there was the allergist at a food allergy conference that I attended about 5 years ago. I asked a question about Mast Cell Activation, to which he replied that there is no such thing. It is made up! That was difficult to hear, but I realized that in his pediatric allergy practice he didn’t have the training to understand mast cell issues. I couldn’t imagine being one of his patients trying to find out what was wrong, and having to hear him negate their experience! I decided to unfollow him on Twitter as my final goodbye to his way of thinking.
When I would hear comments like these from a doctor, I felt he/she was suggesting that my physical symptoms weren’t real. And I knew they were very real, and were causing me a lot of pain.
Yet, I also knew that my mast cells activating had a mental/emotional component to them. And I’ve understood and tracked this better through the last few years. If I feel stressed because of pollens in the air, or feel overwhelmed with work, or not getting enough sleep, my gut hurts more. And why does my gut hurt? Because the twitchy mast cells in my body are most prevalent in my gut. The receptors on those cells are constantly looking for a reason to protect me. And there’s nothing like stress to activate those receptors.
I’ve gotten better at being able to identify when I’m stressed. I have a local allergist’s office that posts the local pollen counts daily, and this helps me to check their website when my gut feels especially cranky. Inevitably, the pollens have gotten higher, and I might need to increase my antihistamines.
I can clue into my body when I’ve been working a lot to see what is occurring in my energy levels. Am I overtired? How am I sleeping? Am I anxious with a new client? All of these help me to monitor whether my mast cells are likely to activate in an attempt to safeguard me. And a lot of those feelings are actually sourced by what’s going on in my brain. What am I telling myself?
This is where I’ve learned that there is communication between my brain and my body that is important to recognize. The desire to be perfect at work and to never make a mistake is sadly a familiar mantra in my brain. Yet, recognizing that I’m human, and mistakes are part of the human experience is something that I still struggle to accept. And when one of those mistakes occur, my brain is likely to chastise me with harsh language. And guess what? The mast cells activate!
Another way that my brain affects me is how I view my condition. I’ve learned with a chronic illness that if I awaken in the morning feeling less than optimal, and I then kick into telling myself, “Another day of feeling terrible,” I’m guaranteeing that I will have a joy-less day.
If, on the other hand, I tell myself, “Okay body, you’re not feeling as well as you would like, but let’s get going and see if this gets better,” it’s amazing how my body starts to shift. Inevitably, I find that I can still take a slow walk in the neighborhood, or even just have a loving conversation with my husband or a friend. And my mood begins to lift, and my body begins to feel better.
I’ve learned that if I wait until I feel wonderful, or even normal (whatever that is/was!) to do things, then I will never go and do anything. Sometimes, going and doing things is what helps me to feel better. And if nothing else, just having a conversation with someone and connecting to them allows my brain and body to shift.
So, while MCAS isn’t all in my head…the thoughts surrounding the symptoms and conditions of MCAS are certainly affected by my thoughts. I’m continuing to learn more about the brain and its wiring with the body with an app called Curable. I will write more on this blog about what I’m learning as I continue to practice the exercises. So stay tuned!