Medical students are taught the phrase “When you hear the sound of hooves, think horses, not zebras”. This is in reference to a rare disease or condition- consider the more common diagnosis first and don’t jump the gun thinking it’s something more outside the box. Unfortunately, many doctors never get to thinking about zebras even after the horse is ruled out. Ehlers-Danlos syndrome is considered a rare condition (though I personally think it’s more common than we think, just under diagnosed), hence those of us with EDS being referred to as Zebras.
While I can appreciate this mentality, and understand the reasoning behind this kind of teaching, this mindset has been incredibly damaging to me and many of those in the zebra community. This kind of mentality leads to underdiagnoses and years of unnecessary physical and emotional suffering. After I received my diagnoses in March of this year, it took months for it to even sink in and for me to actually believe the doctor and what she was telling me. I kept trying to really internalize these new diagnoses and what it meant for me, but all I kept thinking was “She probably just gave me a diagnosis because she knew I was looking for one”. After unpacking this further, I realized this was a result of being told for many many years that I was fine. That it was me. That I just needed to meditate more. Have you tried yoga? (yes) Have you tried acupuncture? (yes) Are you taking B supplements? (yes) Therapy? (yes). These questions also evoke a sense of shame- like it’s my fault I feel this way. Like I’m not doing enough for myself. If I just did X or Y better, I would feel better. Doctors were condescending and would patronize me like I was making a big deal out of nothing.
Cardiologist: “You’re having heart palpitations all the time that take your breath away and make you super dizzy? Well, sweetheart, with that cup of coffee you drink in the morning, it’s no WONDER you feel that way!” (For the record, I did stop drinking coffee for a season and still got heart palpitations.)
Endocrinologist: “You’re hair is falling out? I mean, you did just have a baby. That’s totally normal”.
Me: <shows him how I’m 75% completely bald at this point, before I lost all of my body hair>
Endocrinologist: “Oh, well, you just need to try and get some rest. Stress’ll do that to ya.”
Former PCP: “You eat two eggs in the morning at the same time? You should never, EVER, eat two eggs at the same time.” (literal actual advise from a doctor. Because clearly, occasional eggs are the source of all my problems. Right up there with that one cup of coffee in the morning).
Functional Doctor: “I have some great meditation apps that can teach you mindfulness and relieve your anxiety.”
Don’t get me wrong, I’m all for mindfulness. But mindfulness won’t fix my labral tears. Mindfulness won’t fix my cervical instability. Over and over again I was told that I was the reason for my health problems. I wasn’t doing enough, yet I was trying so hard. I started to downplay my symptoms. They’re telling me I’m fine, right? Guess I must be fine. Having a doctor tell me for the first time how unstable I am was simultaneously scary and so relieving. I hear a lot of zebras feeling this way. I wonder how our journey’s could be different if we didn’t have to experience the emotional trauma of disbelief and belittlement, and could move towards a direction of awareness, support, and education from the beginning.