To Those Who Think 'But You Don't Look Sick' Is a Compliment
Dear greater population,
I realize that having a sick friend can be sort of like stepping into the world of unknowns. I know that sometimes you might not know what to say. But here’s a tip from a sick person – when you don’t know what to say, don’t say anything. Sometimes saying nothing speaks volumes. Sometimes that’s even more important than saying thousands of words.
You think saying, “Oh but you don’t look sick,” is a compliment. Before I got sick I did too. But now that I am sick, I’ve realized that saying that can hurt so much more. It’s like telling a sick person they need to validate their life choices and decisions.
We already have to walk the line with what we do and don’t do because of how it will impact our bodies. There is already one thing in our lives that we can’t control. We don’t want there to be another. We are use to losing friends because of our illness, it doesn’t mean we like it though. We wish we could go out and do anything we wanted at the drop of a hat. Remember a lot of us are young adults too. Young adults who have gotten their lives taken from them, and have to fight with every bone in their body to attain it again.
So, what can you do? Be there for us. Just to sit with us. Come on over when we text you. Don’t think that we are just trying to flake when we say we can’t do things. Believe us.
There are already so many things in our lives that are against us. Be on the side of those things that are helping us, because they are few and far between lately. You may not realize it now, but you helping me, will actually help yourself as well. It will actually give you insight into our lives, and help you understand why we are the way we are. Even though I don’t wish my illness on anyone, I do think it would help the greater population if you saw what one day in my shoes was like. It would help you develop compassion, and love.
Love always, A Spoonie
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Kimi Sorensen is a young adult living and coping with hydrocephalus, slit ventricle syndrome and chronic pain syndrome from hydrocephalus. She lived her first 14 years incident-free, despite being born with hydrocephalus. She had four to five surgeries as a baby, but after her surgery when she was a year old, she was completely fine for 14 years. Her entire world was turned upside down 12 years ago. And now here she is 12 years, 40+ surgeries, and 2 strokes later that took her ability to speak and walk. As a result of sustaining over 40 brain surgeries with more than her share of bouts with meningitis, both bacterial and chemical, she now suffers with chronic pain.
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