One of the problems with seizures is that they often involve (sometimes dramatic) memory loss. You just sort of “wake up” with no memory of the seizure or the time immediately before or after it. It’s a state known as “post-ictal.” This state of amnesia is why my first seizure actually went unnoticed. I “woke up” and had a badly bitten lip. I thought I just bit my lip somehow. I didn’t know what else to think. I was 30 years old and had never had a seizure — I knew nothing about them. I didn’t know anything about biting your lip or losing all memory of it. So I just dismissed the incident and moved on.
The next time it happened, I was in front of a crowd. They saw me have a seizure, but still there was doubt. Did I pass out and hit my head, thus causing me to have a seizure from the concussion? It seemed at the time I might have lost consciousness from low blood pressure or an irregular heartbeat. All I remembered was walking a few steps, then waking up on a stretcher surrounded by EMTs. I didn’t remember waking up, struggling against people trying to help me and hurling profanities at them. Apparently this is not an uncommon reaction after a seizure, but still the neurologist I saw thought it was “nothing.” She didn’t even believe I had a seizure.
I had a full cardiac work up by a brilliant and dedicated cardiologist. Unlike my dismissive neurologist, he did everything he possibly could to find an answer. While my heart was structurally sound and I didn’t appear to have any major issues, he did find some subtle problems that could possibly have caused me to pass out. The seizures were also a potential side effect of the antidepressant I was on, so I was taken off it.
I went almost a year without another seizure, but then two more occurred within a matter of months. My cardiologist, in an attempt to definitively rule out any possible cardiac issue, had a loop recorder implanted in my chest. It’s a tiny device that can either trigger a recording automatically if it senses any disruption of the heart rhythm, or can be triggered by a small wand you place over your chest if you have any sort of incident – which in my case would be passing out or having a seizure. I thought it was overkill, but I was desperate for answers.
My neurologist, however, was less inclined to search for a cause. Instead, she told me my tests came back clear, so it was “probably my anxiety.” She told me that if I just learned to calm down I would be fine. She seemed completely certain I wasn’t having seizures at all — despite concussions, broken teeth, a badly bitten lip and witnesses who said I clearly had a seizure. Since she was the medical professional, I had to take her word that it was anxiety… somehow. But my psychiatrist didn’t seem convinced when I told him that was her response. “I don’t think so,” he said with clear reservations about her “diagnosis.” Still, we decided to just hope she was right and moved on with treating my depression and anxiety.
A few months later it happened – the week that would change everything.
I had seven seizures in less than 24 hours. I was taken to the hospital after the fifth, had another in the car on the way there, and another in the ER as they were about to discharge me. I was admitted to the neuro unit for three days. I was scared, confused and uncertain. What was happening to me?
My neurologist was called and eventually showed up. She was told what witnesses had seen – and even gotten video of. Seizures. Part of my tongue and lip were badly bitten and I had urinated on myself in the ER where doctors and nurses witnessed what they said was clearly a grand mal seizure – like I had been having, but she had dismissed as “anxiety.” After she was told everything, all the evidence stacked up, and she was forced to finally admit that she believed I was in fact having seizures.
Why did it take her so long to come to this fairly obvious conclusion? Why was she so resistant to even trying to solve my situation? Why was she so quick to dismiss me as just another person with “anxiety”?
While I do in fact have an anxiety disorder – it turns out I also have a seizure disorder. Yet, despite all her medical training, my neurologist couldn’t see past her own biases about mental health to realize I also had a physical condition. Somehow my cardiologist had put 100 times more effort into my case than she had – despite the overwhelming evidence that I was having seizures with no cardiac (or psychiatric) cause. She refused to believe me until it was simply impossible to ignore the reality.
And the reality was that I could have died waiting for her to accept the truth of my case.
This is what happens when medical professionals use mental illness as an “easy answer” to dismiss patients as just having problems “with their head” not their body. Physicians wave off potential physical illnesses as being psychiatric simply because a patient has a mental illness. But why does one exclude the other? It doesn’t.
As patients, we often defer to a physician and their diagnoses – even when our own instinct tells us they are wrong. We don’t question them or seek a second opinion – we just accept what they say as correct. Despite the clear concern of both my cardiologist and psychiatrist, I accepted my neurologist’s opinion of my case. I didn’t question her or seek another neurologist’s opinion. I trusted her judgment and allowed myself to believe my mental illness was the cause of all of my problems.
Looking back, there is something that stands out as so blatantly obvious that she was wrong, yet I missed it — other doctors were more worried than her. My incredible cardiologist and psychiatrist are just as well trained and educated as her – yet I dismissed their concerns and accepted her lack of it. Two amazing doctors, both brilliant at their respective fields, and I couldn’t see that the concern in their eyes was a sign that something about the situation was truly, frighteningly wrong.
My cardiologist was not biased against mental health, nor dismissive of a mentally ill patient. He even worked closely with my psychiatrist to ensure they were both working in my best interests and keeping each other informed. My neurologist never once spoke to either of them, nor was she interested in doing so. She was convinced it was “all in my head” – and she didn’t care what they thought or had to say. Yet they were looking longer and harder for an explanation than she was. In the end, they just cared more.
As patients it is far too easy to allow ourselves to be blinded by credentials and accept a diagnosis we don’t really believe is correct. Though we are rarely as educated or experienced as our doctors, that doesn’t mean they are automatically right. My cardiologist encouraged me to ask questions and not settle for anything less than the treatment I deserved. I wish I had seen back then that his determination and dedication was how all doctors should be. It wasn’t supposed to be the exception, it was supposed to be the norm. Your doctors should always be working towards finding answers and solutions, not excuses and dismissals. If your doctors aren’t working to help you, they are hurting you.
Mental illness is not an excuse to write off a patient. Mental health is just another component of overall health – but it doesn’t exclude possible physical illnesses from co-existing. Any physician who automatically believes a patient can’t have a physical condition as well is just being lazy. Question your doctors — if they are truly working in your best interests, they will welcome your questions and strive to find answers.