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Why I'm Beginning to Acknowledge My Pain After Years of Denying It

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I grew up with pain. In a recent Mighty article, people submitted the types of pain they experienced as children only to gain the diagnosis of fibromyalgia later in life. As I read that article, I remembered the numerous doctors who told my parents I was only experiencing growing pains when I complained that my legs hurt, my bones hurt. I remember having far more shin splints as a ballet dancer growing up than the other girls in my class. I remember collapsing in tears during class because my hip would hit me with sudden pain, only to be told once again it was growing pains. I would (and still do) wake up screaming and crying from charlie horses. I would scream into my pillow and cry myself back to sleep so that my parents would never know. I just wasn’t eating enough potassium. It was just normal to feel this way. It wasn’t really pain.

I started telling myself it wasn’t pain. What I was feeling was normal, and that it wasn’t pain and wasn’t a lot of it if it was. Now, I am 33 years old. I have been diagnosed with psoriatic arthritis for three years, and fibromyalgia for two. I learned several years before that that I have an SI joint dysfunction. I now have doctors telling me my pain is very real. It is quite a change.

I’m slowly allowing myself to acknowledge my pain, and know my body enough to discern what pain is from arthritis and what pain is from fibromyalgia. I know which pain is muscle pain, joint pain and nerve pain. I can tell you if it’s throbbing pain, burning, aching or stabbing. But I have had to learn these.

It was fairly obvious to everyone but me that I was in pain. There was the initial pain that was so intense I literally could not walk. But once the steroids kicked in and I slowly transferred from a walker to a cane, the pain became less noticeable to me. Sure, I hurt, but it was completely bearable. I mean, I danced on pointe during my 16 years of ballet; I can deal with pain. I have a very high pain threshold.

So when I went to the rheumatologist for the first time once I had health insurance and could get proper treatment (not just steroids to manage swelling and pain), I got a full and proper exam. He would press and squeeze and tell me, “Oh, that hurts. How does that feel? Yeah, it’s tender.” Meanwhile, I was thinking, “That’s uncomfortable. That’s tender. That’s pressure…” never realizing or acknowledging what he was telling me. That’s pain.

Another Mighty article I recently read was about experiencing imposter syndrome as someone with chronic pain. It was what inspired me to write about my experience of what is essentially imposter syndrome as well. I find myself still talking myself out of feeling pain. I feel a twinge and my first thought is to deny it and say, “That’s not pain. Wait and see if it happens again (it probably won’t) and pay attention. You’ll see it’s not pain.”

People with chronic pain that is invisible are constantly being told their pain is not real. If you are young and don’t look like you should be sick, you can’t be sick. But what is often not talked about is when we tell ourselves, when we try to convince ourselves, that our pain isn’t real. It shouldn’t be there, it can’t be there, it isn’t there. And yet… it is ever-present. It is our constant companion.

I have had to learn and teach myself what is pain, and how I feel it. I have watched the doctor’s face as he squeezes my joints and sees me wince and reacts. That is my tell that he sees the pain I am denying myself. That is my hint that I should pay attention to that and acknowledge it when it happens. Not to feel sorry for myself or to give myself material to write about, but so I can more accurately communicate the pain I feel to my doctors, so I can get accurate treatment for my disease. I have to acknowledge my pain so that someday I may be free of it through proper management of my maladies.

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Getty Image by VolodymyrKozin

Originally published: January 30, 2018
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