Mast Cell Disease Is Very, Very Real (and no, you’re not crazy!)

Many of us with MCAD have been labeled hypochondriacs by doctors, friends, family and sadly, even ourselves at times.

It’s true that there were many times in my life before my diagnosis when I wondered if I was completely mad.

Was I imagining all these symptoms?

Was I “thinking myself sick”?!

Dr. Afrin addresses this issue in his book I’m reviewing and I will be getting to that chapter soon, but I wanted to speak here as a patient with experience of being told “there’s nothing wrong with you, it’s all in your head”.

As a child I had the unpleasant experience of spending most of my infant, toddler and younger years being taken from doctor to doctor, hospital to hospital, looking for answers. I was incredibly ill with gastrointestinal issues, anemia, a perpetually high white blood cell count for seemingly no reason, fainting, seizures and I was prone to infections of all sorts.

They never did figure out what was wrong with me, but it was obvious there was something wrong. There was no name for my disease (MCAS) back then, and I didn’t have the clinical signs of childhood mastocytosis so they wouldn’t have suspected my mast cells at all.

Luckily I outgrew a lot of the symptoms like the anemia, fainting and seizures, but the gastrointestinal pain and feeling as if I was going to faint stayed with me. I continued to get infections (sties, boils, conjunctivitis, bladder, kidney, etc) until I was nearly in my teens.

Then that all calmed down and I was blessed with incredibly painful periods and was diagnosed with endometriosis (no laparoscopy to prove it as I was too chicken to go through another procedure). I had psoriasis, terrible acne, hives, extremely high anxiety and bouts of crippling brain fog as a teenager, too.  I weighed 89 lbs throughout most of high school (I am 5’2″). At 19 I weighed 99 lbs and only broke 100 lbs when I got pregnant with my first child in my twenties. (I am at a healthy 120 lbs now at 44).

During all of this time, despite my medical history, I was told by several people that I was either “thinking myself sick” or that I was just trying to get attention. It really gutted me to hear that from my mom especially, she was the one who took me from doctor to doctor as a baby. The one who saw me suffer more than anyone. Once the visible symptoms went away (the seizures, infections, anemia etc) she seemed to think there wasn’t anything wrong with me.

Even my painful periods were dismissed as “attention seeking” because her and my oldest sister both had confirmed endometriosis and she thought I must be faking it for attention. I don’t know how she got there in her mind, but she did and I was dismissed constantly if I tried to tell her how sick I was. This was very psychologically damaging to me.

It didn’t help that around the time that my more severe symptoms let up as a child, she had brought in two missionaries to bless me. She fully believed they healed me when she took me to the doctor the following week and my white blood cell count was normal for the first time. I had been scheduled for a blood transfusion and they canceled it.

What she didn’t think of, I guess, is that the doctors had been working hard to try to bring down my high WBC and had been giving me vitamin B shots and iron supplements for the anemia for weeks.

It just made more sense to her, I guess, that God “cured me” and that was her story, which she told to everyone who would listen.

It was a true miracle, she said.

The reality was far from that. Any complaints I had from that day forward were dismissed, though, and I was told I was just trying to get attention because I guess, in her mind, even though I was “cured by God”, she thought I had grown addicted to being the “poor sick baby” in the house.

That was far from the truth. I hated being sick and the attention was hardly worth it but the effect it had on me psychologically for her to act this way was devastating. I could not tell anyone, after awhile, anything relating to my health problems because either they didn’t believe me or they seemed baffled.

Especially the doctors.

Doctors are a lot like mothers when it comes to making you feel like a child even when you’re an adult and, like mothers, their opinion holds a very high place in your mind, especially when you are hoping that they will confirm that yes, you ARE sick and maybe even help you figure out why. Maybe even give you a magic cure.

I learned quickly that the doctors weren’t going to help me and if anything I walked away each time feeling as if my mother was right. Maybe it was all in my head. After all, every test they ran came back as NORMAL (something commonly seen with MCAS) and many times when I would try to tell them my symptoms they would look at me as if I were crazy. The ones that did believe me seemed baffled when I refused invasive testing and would also report back that the pills they gave me made me worse.

I even showed them the hives I got and they didn’t know what to think. Many of them seemed uncomfortable at the idea that every prescription I took made me break out in hives. They looked at me funny when I told them the other stuff that came with the hives, too, as if they’d never heard of such symptoms.

As if they didn’t believe me.

As if I were crazy.

It wasn’t their fault, this disease is crazy. As a doctor, after a while, you probably would think an MCAS patient is exaggerating things, or even a hypochondriac seeking attention. After all, the tests often all come back normal!

Dr. Afrin points out that many of us walk away traumatized by our interactions with doctors, some of us, like me, even stop going because we feel let down, confused and even humiliated and it’s not always the doctors intention, if ever, to make us feel this way. One can only take so many “the tests are normal, there’s nothing wrong!” before you start to doubt yourself, though, and start to think that the doctors think you are nuts, or worse, attention seeking.

Then there’s the paranoia factor, a symptom of mast cell disease.

It’s just so damn easy to start believing you’re crazy. Maybe, like me, you start to wonder if you really are a hypochondriac, too, even though you don’t feel like one. Then in a moment of clarity you realize that you are the exact opposite of one  because you avoid doctors and avoid talking to people about your symptoms and you try to pretend everything is normal.

This is normal, everything is normal, there’s nothing wrong with me.

That is pretty much the opposite of a hypochondriac.

You are not crazy and neither am I.

We’re just sick.

Big hugs.

 

xo Michelle Dellene

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