To the People Who Question My Daughter's Chronic Pain
“You can’t be in that much pain all the time.”
“You don’t seem to be hurting that much.”
“This is too far for you to walk? Well, you missed a beautiful rainbow I saw down there.”
“You still can’t listen to electronic sounds?”
“Those are the shoes you chose to wear?”
These are just some of a multitude of disrespectful questions and statements that I have heard people say to my 17-year-old daughter Tia since she developed complex regional pain syndrome (CRPS) at age 11. Some people have the gall to think that they know better than she does how much something hurts her or helps her with her pain condition, or if she even has it at all. Having an invisible condition can be a constant battle to be believed and understood by the world around you.
If you really think about it, how can anyone else but you be able to experience your own body and how much pain it feels? How can anyone else know that Crocs are the only shoes you can wear because of the constant shocking pain that exists in the nerves running down the sides of your feet? Before Tia found Crocs, she did not wear any shoes for 6 months, even during winter in Chicago. I can’t imagine how frustrating it is to have other people judge how much pain you are in.
On Tia’s 16th birthday, our dear friend Julie reminded her, “Oh, Tia, I remember when you used to walk around on your knees to get around. It’s so good to see you walking at all.” First it was the crutches, but when CRPS spread into the other foot, it was the wheelchair or, at home, walking on her knees. She could scoot around pretty fast on her knees, up and down the stairs and into the family room. It scraped up her knees pretty bad, though, and made going into the kitchen unmanageable since the tile floors were too hard to scoot on. Tia did not wear shoes or socks for over five years. Nor does she put her feet under the covers when she goes to bed at night. Anything touching the sides of her feet sends the chronic pain she constantly copes with up to an unbearable level. Then three years ago, after a session with a physical therapist, she developed the severe sound sensitivity experienced by 30 percent of people with CRPS. Now she has extreme pain in her feet when she is exposed to low-frequency sounds.
Having an excruciatingly painful condition is a lot for a child to cope with, but when you add the constant requirement to ask people to turn off their phone ringers or music in their cars, it’s even more. People can be kind and understanding and wonderful. But to those who “aren’t sure if it’s real or psychological,” or who think people pretend to have pain in order to gain attention, or want her to push herself more, or think she “better” get back to school, I want to say this: No one has the right to judge what someone else is feeling in their mind, body or soul. Our job as fellow humans is to learn to listen to what another says, without trying to decide whether you think it is valid. It is valid when Tia says it is.
Never judge a girl until you’ve walked half a block in her Crocs, because that’s about the distance that she can go before her pain starts skyrocketing. And if you don’t believe her, that’s your problem.
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