From the beginning, I blindly placed trust in the physicians who were handling my case. I had been reassured that these were the doctors most qualified to handle and treat patients with mastocytosis in my province. This sounds great, right? We all want to be with the best of the best when going through something like this.
But I was repeatedly let down by my doctors an unacceptable number of times during the first 18 months that followed my official diagnosis of indolent systemic mastocytosis (SM).
Waiting for the next mistake
During my first encounter with my immunologist, he explained to me that there was something in my results that he wanted to review with the pathologist. When I saw him again six weeks later, he told me that he had completely forgotten to look into my results, and therefore there were still questions without answers.
Other incidents like this occurred with all my specialists. It caused me a lot of anxiety.
I became increasingly nervous about upcoming appointments, wondering how exactly my doctors would disappoint me next. The anxiety made me practically dysfunctional on appointment days: I would get overwhelmingly stressed out, and by the time the appointment was over I would be completely exhausted. My anxiety was never without reason, though — there was always something said or done during these appointments that justified it.
Even with maxed out medications and lifestyle changes, I was still highly symptomatic, so I spent some time researching other options. I approached my hematologist-oncologist about trying imatinib as a treatment, and she was on board. After two months of treatment, my hair was falling out in clumps. My hematologist-oncologist sat me down at our monthly follow-up and told me that she had “finally reviewed my file properly” and was no longer certain that I was a good candidate for the medication. Even as she was telling me this, she was very vague about whether she wanted me to actually stop the treatment. Though I had been adamant about trying a new approach, if she had told me that she wanted more time to think about it or review my records when we originally discussed the option, I would have understood, and even felt reassured.
I had also spent months, from August to January, telling her that I was having episodes where I felt like my heart was racing and I would collapse — and that they were becoming more frequent. She never acknowledged it, until I was finally at a point where I couldn’t even stand up without collapsing. She had me go to the ER, and I was hospitalized for five days. I can’t help but wonder how things would have been different if she had taken me seriously one of the first times I brought it up.
Following these incidents and the stress that they brought, I began to suffer from functional dissociative seizures (FDS). These seizures were my brain’s way of taking a break from the brutal reality that I was living. This was also very traumatic for the people around me, as we didn’t know what was happening. It was only after months of seizures and another hospitalization that I was given the diagnosis of FDS.
These types of seizures are non-epileptic and pose no immediate danger to the person experiencing them, but they can be very scary to experience, both as a patient and as a witness. For this reason, I had to re-train my brain to rely on other, less drastic, ways of coping. Luckily, I already had a psychologist that I knew and liked, who had been present through most of my diagnostic process.
Learning new ways to cope
It has been extremely helpful to set aside time for therapy, but there are also a multitude of other habits that I have put in place.
Some of my tactics are very simple, but effective. I try to always keep my mind busy, by working or having the TV on in the background while I do a puzzle. I also keep a list of questions I want to ask at future appointments. That way, when I think of something I can just write it down and move on from the thought. I also exploit my love of travelling by researching different trips I may want to do, even if I won’t be travelling any time soon. Sometimes, just sitting with my dog and petting him can also help to calm me down.
Setting boundaries has also been effective. If a friend or my mom brings up something to do with my medical situation and I don’t feel like I’m in the right headspace to manage the anxiety that the conversation might bring, I make sure to communicate this.
There are times when my anxiety is too much for these distraction methods, so I’m still learning to sit with the anxiety and work through it. One method that has felt useful is writing down my thoughts. If someone is available, I’ll try to talk through what’s on my mind.
I’ve managed to go about a year now without having a full-on seizure, only sometimes teetering on the brink of one. My coping mechanisms seem to be effective enough to ward them off, though I am constantly brainstorming new ways to deal with this anxiety.
I learned very quickly that the anxiety that comes with medical trauma is no joke, and needs to be addressed in one way or another. I am still working on coping mechanisms, and probably will always have to as new challenges arise.
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