Why This Comment About My Chronic Pain Made My Day

I have lived with dystonia for over 15 years and it has been a roller coaster ride to say the least. It began with some minor involuntary movement that turned into severe, involuntary muscle contractions with pain
unlike anything I knew existed. Having had many sports injuries throughout my life, I thought I knew what pain was like. How wrong I was. Pain from dystonia at its worst is in an entirely different category.

Early on, a couple of my coping mechanisms for my chronic pain, awkward postures, anxiety, and depression were comfort food and alcohol. Within five years of when my symptoms began, my body started to put on weight. Eventually, I didn’t recognize myself. I understood why I had done this to myself, but I couldn’t believe I let it get so out of control.

After having enough of looking and feeling so sick, I made a decision to dedicate myself to health. After finally finding some treatments and therapies to help ease some of my dystonia symptoms, I began to tackle the weight issue. After about a year of healthy eating and exercising, my body became healthier. People commented on my weight loss all the time. It was great to hear, but I felt like people were missing something because I was still in pain. Not as bad as it once was, but it still impacts my life in many ways.

Since I was so much thinner and looked far healthier, people assumed I felt great and was cured. People still assume this same thing years later because I still look healthy, which in the minds of most people equates to not having problems. Humans are visual creatures so I understand and am not bothered by it. I just wish people would believe me when I tell them how I feel, especially doctors.

Then the other day I ran into a friend who had last seen me when I was obese. She was happily shocked at my weight transformation and so proud of me, which made me feel great. Like everyone else, I expected to get the question, “So how do you feel?” Instead, she said something that had a much deeper meaning to me since most of my painful symptoms are invisible, which she knows. She said, “I hope you feel as good as you look.”

At first I didn’t know what to say. It just made me feel so good to not have someone judge me by my appearance. It also opened the door for me to share how I was feeling and have someone believe what I said.

For anyone wondering, the question, “How are you feeling?” gets really tiring after a while when you live with chronic illness. With most people it is the first thing out of their mouth when they see me. It’s OK, but I want to talk about other things besides my health because I do have a life outside of chronic pain and dystonia.

However, when my health does become a topic of conversation, I hope more people will say, “I hope you feel as good as you look.” I say it all the time now because we never know how someone is feeling on the inside and this lets them know we understand and care.

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