Why I've Accepted Being Unable to Style My Hair Because of Pain

I have never been good at combing and styling my hair. As a child, I never really cared much what my hair looked like in the morning. I was a bit of a tomboy, so styling my hair was not important to me. As I got older, I became more concerned with how my hair looked before I left the house in the morning, particularly once I became a professional, so I was extremely excited when I finally had a job that allowed me to afford to get my hair professionally done every other week.

I look at my hair as my crown, and all queens or princesses like their crown to be polished and shiny. So when I began to have pain and muscle weakness in my arms, it was discouraging, to say the least.

Even before I was diagnosed with Pompe disease in 2015 I had pain in my right arm, and noticed that styling my hair with a curling or flat iron became difficult. After a few minutes of styling and combing my hair, my right arm would feel tired and begin to ache. Sometimes it would take me almost an hour to comb my hair in the morning because I would have to stop several times to take a break.

In 2016, my family and I moved to Australia, and it has been difficult to find a stylist here who can style a black woman’s hair. I had a wonderful stylist for the first year that I lived here, but he moved away, so I was back to styling my own hair and without a professional’s help. Within the last year the pain in my right arm has become more severe. I found on some mornings I did not have the strength to comb my hair. This was depressed me and I went through a period of being angry and feeling sorry for myself. My husband offered to help me with my hair in the morning, but I didn’t want to ask him to do anything else for me. I know he would, but as a person with a disability, I sometimes feel that I am asking too much of my family and friends. I was embarrassed to leave my house without combing my hair and began to feel unattractive.

After sharing my experience and feelings with my Facebook community and receiving some constructive and supportive feedback, I decided to make some changes.

I have loved hats since I was in high school and had many hats to go with different outfits. A few years ago I began wearing hair clips as well. I thought I would go back to wearing hats and look for other things to wear in my hair on days when I could not style it. So I bought several hats, scarves, headbands and hair clips. I also started wearing my hair natural about four years ago, so I also wear my hair curly more often. It’s easy for me to wet it in the morning and put a little product in it and just go.

It was a hard lesson to learn that my hair doesn’t have to look a certain way for my crown to be polished and shiny. I also realized that wearing a flower in my hair or a nice hat often made people smile. I receive a lot of compliments when I wear my hair curly, and I have had doctors say to me that they remember me and Pompe because they remembered the lady with the flower in her hair. I love my hair again; it’s fun in the morning to decide how I am going to style my hair. Picking a hat, scarf or hair clip is like picking an outfit or a pair of shoes. I have also learned that how my hair looks in the morning is not the most important thing in my day. Of course I want my crown to be shiny, but the important thing is that I can put it on each morning.

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