When Your Condition Is So Rare That No One Knows What to Do
The saying “you look well” is usually a lovely comment to hear. But when you hear it time and time again when you don’t actually feel well, it can get you down. I don’t just hear it from friends and colleagues, I also hear it from doctors and nurses when I am feeling incredibly vulnerable.
Not so long ago, I entered my local emergency department with severe back pain. I knew something was wrong because I couldn’t sit down and pain was radiating to my chest. I explained to the triage nurse I recently had a chest infection that lingered. Due to my long-term condition, scimitar syndrome, I am vaccinated against flu and pneumonia. So for me to get a chest infection is rare. However, when I tried to explain this to the nurse, she said “you can’t just say you never get chest infections; everyone gets them.” I felt shut down and like I couldn’t get my message across.
What I was trying to say was, “I don’t really get chest infections, so I feel like this could develop something further.” There I was again, in the emergency department looking fine, by myself and just wanting this to be over. All I wanted to do was get my message across and feel better, but I felt like I was being stereotyped and that people thought I was exaggerating how I was feeling — when in fact I was scared.
After some tests, I was told the doctor who was going to see me knew my condition and had seen me before. This put me at ease, because I thought he could compare today’s results with old ones. However, it turns out the doctor didn’t know anything about me.
All I wanted was someone to be able to empathize, to talk to me like they believed me or to just reassure me that things will be OK. I walked in to the emergency room because I was scared and vulnerable and because yet again, there isn’t enough information about my rare disease for me to know what to do.
To people who were there in emergency room as patients, I might have “looked” OK. You might think I was seen before you unfairly — but please know I was struggling too.
To the doctor in ambulatory care, thank you for listening, for asking me questions and for taking in what I was saying.
Just because we have a condition you have never heard of, it is still very real.
Have you experienced something similar? Please share your story in the comments:
Getty image by gorodenkoff
I’m Katy and I live with the rare disease Scimitar Syndrome. I have my own podcast called 'my rare disease' all about giving rare disease patients a platform to share their stories and to educate others about how illness can impact different elements of a person's life. I am passionate about raising awareness of rare disease because collectively having a rare disease is not rare, it affects 1 in 15 people worldwide and therefore we need to be heard.
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