I had an appointment with one of my immunologists yesterday. I like this doctor. We have an excellent relationship. He has been with me through a lot. When I met him several years ago, I didn’t know what I had but I knew my diagnosis was wrong. He didn’t know what I had, but he believed I had something and was willing to try some unusual choices. Some of them did nothing. Some of them worked. The ones that worked gave us information that ultimately led to me being diagnosed with mast cell disease.
At the same as I was being seen by this doctor, I was also being seen by a doctor, a rheumatologist. This rheumatologist thought I had rheumatoid arthritis and did not think I had anything else wrong with me. This rheumatologist went so far as to state that all my (anaphylaxis) attacks were due to anxiety. He thought I was a hypochondriac. He wasn’t alone. I was seeing several specialists at the time, and all of them thought I was generating abnormal lab results by being upset about life. All of them except this particular immunologist that I saw yesterday.
About two months before I was diagnosed with mast cell disease, I stopped believing that the disease was damaging my body worse than the many medications I was taking without a solid diagnosis. I was tired. I was mentally unable to fight anymore. It is so hard to keep believing something is true when so many people who should be able to find it insist that there is nothing there. I decided to discontinue all of my many medications in a last ditch effort to identify what I had. Predictably, I anaphylaxed and went to the hospital to be monitored and tested for a few days. But no one recognized it was anaphylaxis, so they didn’t find anything. I gave up and went home. I told my immunologist that I was done and I meant it.
Two weeks later, the week of Christmas, he called me. He told me that there was one more person he wanted me to see. I told him I didn’t want to see anyone else. That I meant it when I said I was done. He told me that he thought this person would know what I had, and that if nothing came of this one appointment, he would leave me alone. And because he had believed me for so long when no one else did, I agreed to go.
That appointment happened on a Tuesday four weeks later. It is the appointment where I was diagnosed with mast cell disease. I never saw that rheumatologist, or any of those other specialists, again.
I was very lucky. I was lucky that I didn’t die from anaphylaxis prior to diagnosis. I was lucky that my family and friends (most of them) continued to believe me when it was unclear if I was right. I was lucky that I had even one doctor who believed me.
This is not always true for people without diagnosis. This is not always true for people with diagnosis. There is a very real tendency by medical professionals to ignore or downplay things they do not understand. There is a desire to always be the most informed person in the room.
I interact a lot with providers who don’t know very much about mast cell disease. I explain a lot of things to them. Some people are grateful for the knowledge. My stoma nurse recently said to me, “I love you because I know you’ll tell me exactly what you need.” Sometimes they appreciate my directness. Sometimes they refuse simple requests for no reason other than the fact that I had the audacity to know about it when they did not. No one likes to be told what to do, but for people like me, there isn’t always another option. I can’t assume that they will eventually arrive at the appropriate conclusion when they don’t understand my disease.
Once they get mad, they are not interested in providing me the best care anymore. They think I’m a know-it-all and they tolerate me at best. “Smart people like to feel smart,” the floor intern told me during my recent admission, as explanation for why the resident was frustrated when I understood my symptoms better than she did. “I’m smart, too,” I reminded her.
I am not a medical doctor. I was too sick to go to medical school. Before I knew I had mast cell disease, I spent years researching various diseases that I thought I might have. I have worked in medical research for thirteen years, worked in pharmacy for ten years, and have both undergraduate and graduate degrees in the biological sciences. Additionally, I have direct access to mast cell fluent people through my job. These experiences have taught me a lot about medicine, physiology and pharmacology. If I sat the med school admission exam again, I would do well.
When I was diagnosed, I spent months doing nothing but learning mast cell biology. I got books, read papers, emailed researchers, called doctors (some of whom even called me back.) Even still, I read papers about mast cell disease and related topics on a daily basis. I do not know everything, but when it comes to mast cells, I know this shit cold. But that only helps me if my doctors see me as participating in my care and not making outrageous demands or insulting their intelligence.
Yesterday, my immunologist and I discussed whether or not I needed to go to the hospital after self-administering epinephrine. I am anaphylaxing a lot these days. I regularly lose four days of my week to intense pain and borderline anaphylaxis, in that “safe to not use epi if I drink Benadryl constantly, but very uncomfortable” stage. He agreed that when that happens, I can give myself epinephrine and IV Benadryl at home and not go to the hospital if things stay stable. This is a huge relief. He knows that if I feel unsafe, I will go to the hospital. He knows this because after years of seeing me, he understands that I can be trusted to make decisions like this for myself.
Many people don’t have doctors like that. It makes me so mad to see people talking about how their (non-mast cell aware) doctors won’t increase their antihistamines, prescribe mast stabilizers, learn about their disease. It makes me so mad when my friends are told by specialists that they “don’t know about their disease,” as if they shouldn’t be expected to educate themselves beforehand. It makes me so mad when doctors ascribe any problem you have to mast cell disease when we so frequently have comorbidities. It makes me so mad that we have to argue for the things that keep us safe when getting tests, procedures or surgeries. It endangers us and forces us to understand our disease in order to prevent injury, something that isn’t always possible.
There is no remedy for this beyond education and a new paradigm in medicine that involves active patient participation. I worry about my friends who don’t have a good relationship with their doctors. It makes me extra grateful for people like my immunologist.
Last night as I was drawing up my IV Benadryl, I literally thanked him out loud. I am one of the lucky ones, and I know it.