In the world of medicine, healthcare professionals are taught this sometimes logical thinking when it comes to diagnosing a patient, ‘when you hear hoof beats, think of horses, not zebras.' What this simply means is when a patient shows up with symptoms, even if those symptoms are more unique in nature, they most likely are not going to end up being a zebra and being diagnosed with a rare condition. However, what happens sometimes, some of those patients do end up being a zebra. Most often doctors focus solely on their patient "having" to be a horse and dismiss all their zebra stripes. This can lead to more misery, prolonged and worsening of symptoms. Emotional and mental agony can also occur, which is also known as medical gaslighting.
I understand what this feels like. I understand every part of this. I was never the damn horse. I was always the zebra.
I am in tuned to my body. I always have been. I know when things just don’t
feel quite right. I can sense the feeling of worsening of symptoms, an
approaching flare, and patterns. It’s my body. I have learned (and still am
learning) to listen to what it is trying to tell me.
I have learned a lot about the medical world. Specifically my conditions. In many instances, I know more about my own health conditions than a lot of doctors. It’s nothing new, to receive a puzzled look from a medical professional when saying the name of a medication and one of my conditions. Most days, I am understanding and compassionate that maybe they are not familiar with my condition, because it is, in fact, rare. So I take the opportunity to spread awareness and educate others about my conditions in hope that the medical worker will remember and be able to help the next patient that shows up with my condition.
But, it can also on some days, leave me feeling disheartened and even more of the odd one out when I sit schooling a medical professional about something like Trigeminal Neuralgia or Occipital Neuralgia.
But what about when you end up feeling not seen, heard and validated and even shrugged off or dismissed by your own doctors that treat your rare condition? When you’re left feeling that you have been left in the proverbial dust; left to treat your own condition without the resources that your doctor has? For me it’s hard to grasp the word and words to describe this feeling. Sometimes, it shows up in the feeling of disbelief, feeling dismissed, anger, sadness, and a stinging deep to my core, and ultimately feelings of hopelessness.
Let me paint a picture of some scenarios that I have experienced.
I have Trigeminal Neuralgia. It’s rare. I am aware of that. I know it’s extra rare due to my age of developing it at seventeen. My first neurologist almost completely dismissed this diagnosis due to my age alone, but ultimately sent for confirmation, via an MRI and a radiologist that he trusted. It confirmed Trigeminal Neuralgia on scan (I understand that is not always the case for everyone and they still have the condition). Even with that information, my neurologist at the time was reluctant about giving me the diagnosis, once again only due to my age. But because there had been (as he told me) an in depth argument by the radiologist that he knew and trusted he had no choice but to give me the diagnosis, though reluctantly. To this day, I am thankful to that radiologist I never met who advocated for me.
My neurologist did treat me as if I had TN (which I did and still do). It still left me feeling stung though. I knew down deep that this had been the accurate diagnosis even before receiving it. Not being fully believed by your doctor, is well, not a nice feeling.
I remember one of the medications he had given me caused anxiety and feelings of panic. I was scared to bring it up to him, because well there wasn’t a lot of trust there in the first place, somehow though, I dug deep (like I find myself doing often with chronic illness) and found the bravery to mention the anxiety and panic that had developed on the medication he had prescribed. I was dismissed as a young woman with emotions. I felt like crying in that moment. I remember telling him that this was not normal for me and this medication was scaring me. He told me I would be fine. Obviously, I didn’t believe him even though I wanted to hope that the medication would work.
In the end, that medication was discontinued due to not helping my Trigeminal Neuralgia . And yes, the anxiety and panic left with it. My mistrust in the doctor did not however.
That experience has
never left me. It still stings some days. I don't think some doctors think
about the impact that they are leaving on their patients. Especially their rare
and chronic illness patients.
Because we have chronic, rare conditions, we are more often not going to be believed rather than believed. It is very overwhelming at times. It wares on us. We have no control over our bodies and sadly we don't have any control over doctors believing in us either.
If I had a message for doctors, it would be this, please consider the message you are sending to your patient, even more so to those of us that are zebras. Pause. Our zebra stripes are not going away just because you refuse to see them. Please take time to see the patient and the person sitting in front of you. Hear us. Believe us. See us. Fight for us.
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