This is probably one of the most difficult topics relating to mast cell disease but it’s one of the most important ones to address, in my opinion.
It is so important that we as patients understand that while we may exhibit a wide assortment of symptoms including various psychiatric disorders, we are not crazy or faking our illness.
Dr. Afrin discusses this at length in chapter 18 of his book, Never Bet Against Occam.
It is a fact that mast cells reside in every tissue in the body, and it also is a fact that they have a predilection for associating with (among other types of cells) nerve cells. Furthermore, we know there is extensive “cross-talk” between nerve cells and mast cells under normal circumstances. So why wouldn’t we expect a disease of chronic, body-wide mast cell dysfunction to cause dysfunction of nerve cells potentially leading not only to disorders traditionally classified as “neurologic” but also to disorders traditionally classified as “psychiatric”?
Mast cell degranulation can cause many neuropsychiatric symptoms and this fact doesn’t change despite what we think or what anyone else thinks, including our family, friends and even unfortunately our doctors who may want to write us off and label us as hypochondriacs or just simply “crazy” because, to them, there is no rational explanation for our symptoms.
Many of us have unfortunately been labeled as hypochondriacs and encouraged to seek psychiatric care and Dr. Afrin acknowledges this:
And thus I hear, from patients found to have (or likely to have) MCAS, story after plaintive story after despondent story of “My doctors have never been able to find anything wrong with me and just keep telling me it’s all in my head!”
There were times in my own life when I felt like my doctors thought my symptoms were psychosomatic. For me it began in infancy when they couldn’t find the cause of my seizure disorder. More than once as a teen and adult I was referred to psychiatry (a common occurrence with this disease). Eventually I doubted myself and felt like I truly needed psychiatric care so I sought out doctors who were all too happy to label me with various labels and give me psych medicines.
None of them worked. Most of them made me far, far worse. All of it destroyed my self worth and made me question my sanity.
For some of us, these labels, medicines and experiences can destroy our careers, relationships and lives. Luckily at least one doctor, Dr. Afrin, truly “gets it”:
I’m saddened to have seen it so many times; I can’t imagine what it’s like to live it, the loneliness, and the guilt. “What’s wrong with me? Why must i be such a burden — especially with problems that are just imaginary — on my family and friends? I feel all these symptoms, but they don’t exist — the doctors say so! — and I can’t even begin to figure out how to just think my way out of them.”
So what sort of neuropsychiatric disorders can be attributed to MCAS?
- paresthesias (tingling and numbness)
- cognitive dysfunction (brain fog)
- tics and tremors
- dysautonomia “spells”
- anxiety & panic disorders
- mood disorders
- depressive disorders
- sensory disorders
- obsessive compulsive disorder
- bipolar disorders
- autism spectrum disorders
- schizoaffective disorders
- substance abuse
The good news? Many of these co-existing conditions are very real but they can be completely eliminated or the symptoms greatly reduced by proper diagnosis and treatment of mast cell disease.
So it’s EXTREMELY important to seek out a mast cell disease specialist and get the proper therapies to find relief. A healthy support system is crucial, too, and reminding ourselves daily that we’re NOT CRAZY is essential.
This disease is very real and you’re not crazy. Neither am I. We are just sick.
In regards to being labeled as a hypochondriac, Dr. Afrin has this to say:
Bottom line: incorrect diagnosis of psychosomatism is a huge problem in MCAS and can delay diagnosis for years, decades, or even the “hypochondriac” patient’s entire life. I don’t walk in the psychiatrist’s shoes, so I can’t say that psychosomatism as the primary diagnosis for a symptom menagerie doesn’t exist, but what I can say is that I haven’t met the patient yet who had previously been so primarily diagnosed — and who turned out not to have MCAS.
I am so thankful that there are doctors like him out there and I again encourage everyone to buy his book. In fact, I’m so appreciative of his work I’m giving a free copy of Never Bet Against Occam away soon so watch for the post with details on how to win a copy for Christmas coming tomorrow.
In the meantime, remember, we’re all in this mast cell craziness together. Hang in there and good luck!!
Oh, and YOU ARE NOT CRAZY!!!