The Challenging Invisible Nature of Scimitar Syndrome
I am just going to say it how it is: invisible illnesses are so annoying! It is nice to appear “healthy,” but having an invisible illness means that people don’t instantly know that you have an illness or disability.
I recently sat down with a friend and started talking about my illness, scimitar syndrome. After explaining how it works and what happens when I go to hospital, etc., my friend was really surprised. She said that because there are not visible signs that I am unwell, she often forgets I go through all this. This really made me think. She is right — I feel my condition every day but it can often be difficult for my friends to remember that I have a burden on me and it will never go away.
What some people don’t realize or might often forget is that sometimes, our illness can waste our days. Most of the actions I take and nearly everything I do is affected by this condition I have. While I might seem OK when at my university, I am actually trying so hard to be OK, keep up to speed with my friends and get as much out of my lectures as possible. To my friends, my illness may not appear to always be affecting me but believe me, it is — it really is. It would be nice for me to be able to forget about it just as my friends do sometimes.
My disease may be invisible but the symptoms and side effects I get from it are horrible. The Raynaud’s episodes, the back pain from scoliosis, the severe migraines and day-to-day breathlessness make my invisible illness very real.
Never judge anyone from what you can see — you could turn out to be very wrong.
My disease may be invisible to you, but it’s never invisible to me.
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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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