Why I Say 'I’m OK' Despite My Chronic Pain
We’ve all heard it before, especially as people with chronic pain. Your aunt or grandma comes over and says, “Oh honey, and how are we feeling?” You may sort of stare and think of what you’re going to say. Me? I just use my go-to phrase, “I’m OK.” Many people seem to think if you look OK and act OK, you must be fine. That’s the thing with those who are chronically ill and have chronic pain — we become experts in hiding our pain from other people. Each person has a different reason for doing this. Mainly, I do it for my own emotional protection because I don’t want to be asked the typical 20 questions about it for one simple reason: it’s never going to change. It gets worse at some points, better at others, but that’s rare. It’s never going to go away.
Many people say it just to be nice because they feel uncomfortable around others. And do I want to make them feel more uncomfortable by responding, “No, my skull feels like it’s constantly being sawed into and whenever I touch my scalp it feels like it’s on fire. Whenever I sit a certain way, my tubing moves onto a nerve and it feels like you just stabbed me with a big wooden stick all over?” Of course not because that just makes it more awkward. I sure don’t know what I would say if someone just threw that out there when I was standing next to them.
The truth: I’m in terrible pain all the time, but I don’t want you to feel awkward, especially if I’m out having fun. Just keep it in mind that I am in pain 24/7.
I’m afraid of the future. I’ve been told I’m only going to get worse as time goes on and have more and more surgeries. Yes, there are those rare cases where you don’t need surgery for 20 years or so, but in my case the chances of that happening are slim to none. I know none of this is my fault. I know my illness is just completely unpredictable and that’s the reason I have chronic pain. Some days I feel better than others, but some days I really do not. I know there’s nothing I can do about it. I just have to accept it and move on.
Yes, right now, I am doing better than I have in a long time, but that doesn’t change the fact that I’m constantly in pain. And yes, I smile through chronic pain. Yes, I laugh through chronic pain. It’s the same way a mother who’s just given birth and in immense pain, can be so happy and in awe as she looks down at this baby she just helped create.
So yes, ask me how I’m doing. I don’t want you to be afraid of asking me. Just don’t be surprised if you get the same answer all the time.
Follow this journey on Blessings in Hydro.
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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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