What I Need From Doctors as Someone With a Rare Congenital Heart Defect

Dear medical professionals,

As quoted by Rare Disease UK, 7 percent of the general population will have a rare disease in their lifetime. This may not sound like a big percentage, but this 7 percent consists of vulnerable people who may need lots of care and treatment in the hospital. But while the hospital may seem like the best place for these rare disease patients, it can actually be the place where people realize how incredibly difficult it is to have a rare disease.

Dear medical professionals,

Over the past year, I have found it increasingly difficult to tell people about the illness I have. I do not mind friends and other non-medical professionals asking me to explain what it is, but in the past year, I have had one nurse and two paramedics look at me very confused when I told them I have scimitar syndrome. No, I do not want them to lie and pretend they know what it is, but I want to be reassured they are willing to find out the necessary information and able to understand it better when I explain it. After all, they are the medical professionals, not me. When two paramedics came out to me earlier this year, they started to Google my condition and asked me how to pronounce it and how to spell it.  This did not leave me feeling reassured at all.

Having a rare disease can make people feel people extremely vulnerable and isolated, so the last thing we need are for medical professionals to not understand us. We put our trust in you and, at times, we put our lives into your hands. Reassurance at these worrying times is exactly what we need.

Dear medical professionals,

I am not asking for you to know everything about every existing condition, but I do ask that you try and understand as much as possible and reassure us that you are willing to find out all of the relevant, necessary information.

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