The doctor-patient relationship and the danger of self-advocating

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.

4 Responses

  1. Sharon Coleman May 30, 2014 / 2:37 pm

    Thank you for sharing your story Lisa. I am also a scientist but it is my daughter who is affected and she is quite young and was told by her first consultant that nothing could be done and just join the anaphylaxis society. She now imbives certiszine hydorchoride and some other meds and is relatively stable. My very good wishes and thoughts are with you.

  2. DebbiePlaysWellWithOthers September 8, 2014 / 2:13 pm

    Hi Lisa, I’m Debbie the lucky one with systemic Masto who never persued a diagnosis due to all you stated until 2013. The lucky part the endrencrinologist I saw with my very articulate life history along with my complaint that his assistant caused me a great deal of pain during my first experience with an automated blood pressure machine. I showed him my arm which was bright red and itching and quite painful and I think that was the first thought that I had mastocytosis because that was obviously pressure Uticaria to him. As I learned via tests about high tryptase along with prostaglandins, my lifetime of oddball things became more apparent to me. No one in my city knows what mastocytosis is, but oncologist was kind and explained that I was a zebra and all zebras go 400 miles away to the big city. I have a specialist who knows very little about mastocytosis but I keep him because I understand he’s a blood wizard and I understand I need that for overall health, i’m guessing here because I’ve always been basically healthy. He provided standard treatment of double dose of anti-histamine added to the Sudoguest I took for my chronic sinus issue, adding 40 mg of Claritin to the 90 mg of Sudoguest overdosed me. Over the past year I have been battling what I called congestion and one ear which progressed to tinnitus, I just finally saw an ENT I went through all that you stated in this blog, he diagnosed Ménière’s disease and avoided the one piece of important information I presented, when I palpitate of my neck it induced vertigo which at times came along with tinnitus. This caused me to start my own research and I felt that I really had plug the eustachian tubes, so I went back to my old Nasonex that I used to treat my sinus with along with Sudoguest and a muscle relaxer, Lorazapam, due to my jaw always being tight and the area under that ear feeling swollen or inflammation filled. For the first time in a year, I’ve got my ears to clear on the lowest doses of these three drugs. I basically said too much I believe with the ENT doctor to the point I think I need to move on, so my question is I’m afraid of going through the same thing again with another ENT that is unable to understand. Is what I’m experiencing the road to complete hearing loss in your opinion, I have yet to find someone with mastocytosis that is having the same experience to ask, I know I’m asking a lot but I value your opinion. I have slowly been taking care of my own needs due to the lack of physicians understanding, and I’m sensitive to drugs and I fear the side effects. I also fear having a standard treatment that’s invasive that isn’t going to fix anything because our cause is not understood. I’m slowly reading through all your wonderful thoughts, thank you for sharing them, they’re all amazing to read as I glean information from each one that I need.
    Hope this finds you having a stable day filled with joy, Debbie
    PS I was amazed when this doctor I just saw had no idea who treated the neck area if lymph nodes were involved, wasn’t interested in this information at all, I guess the part of the neck underneath ones ear is not close enough to your throat for him to give a care at all. Hey made me feel as if he had five diagnosis to choose from, and his goal was to get you to fit one of them, then without speaking to me on my paperwork he ordered a hearing test and a balance test with another doctor. I was astounded that he didn’t mention either of these, I’m heat intolerance it’s 100° in the middle of August, no one understands you cannot get back into your car after it’s baked in the sun without triggering A major flushing event. My goal is to not increase the progression of my condition by being stupid, because some days I’m brilliant!

  3. DebbiePlaysWellWithOthers September 8, 2014 / 2:25 pm

    I do have a PA I’ve seen for my sinus for years, every third year I’d get bronchitis but that’s been my main health issues. I gave up 15 years ago on trying to find out why I felt like I was running a fever, why my body could not regulate its temperature, nobody knew I just figured I was genetically predisposed to cold weather, i’ve had flushing for years but didn’t realize I was odd, I had a parent that was unaware of my oddities I guess. Pressure Uticaria is something I had since I’ve been a child and nobody said it was weird. I now wonder If my best health care choice is to ask my PA if he can help me treat my plugged eustachian tubes along with whatever else comes my way as the years progress, he trusts me and I trust him and he’s not afraid to say I don’t know but I’ll find out and he does. Would love to hear your brief thoughts on all my ramblings thanks again!

  4. antonio November 13, 2014 / 9:46 am

    Ciao lisa ,ho la mastocitosi sistemica ,volevo sapere come va la ricerca in America.

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