Why I Dyed My Hair Purple This Month


For most of my 11 years as a chronically ill person, it was easy to miss me.

My story starts, as so many complex regional pain syndrome (CRPS) stories do, with a little arthroscopic surgery to fix a dislocating patella. I woke up to searing, burning, constant pain, a wound that wouldn’t close, and an inability to move my swollen leg from the knee down. I’m not going to go into the horrors of desensitizing my leg and learning to walk on it again. I will sum it up by saying it was months of hell that I wouldn’t wish on anyone.

And I, like anyone with a chronic illness who reaches a good plateau, thought I was through. I could walk, though sometimes I needed a cane. I resumed riding my horse, although the tall boots were painful enough to skip eating until they came off. My leg progressed to a “cold presentation” and spasming became more of a problem than the edema. I went back to work as an art teacher.

“I am going to conquer this,” I whispered to myself.

CRPS is a big, giant enigma. The best minds in medicine are beginning to wonder whether it is an autoimmune neuro-inflammatory disorder. It is known to progress, though not always. There are no medicines that treat the underlying unknown disease, just the symptoms. There is no cure. For me, lumbar sympathetic blocks helped my left leg, but not my pelvic or right leg problems. Stellate ganglion blocks helped my hand and arm. They don’t work for everyone, and no one knows why.

In the past six years, my body began a snowball of changes. I became asthmatic, developed digestive problems, cardiac symptoms, and insomnia. Then there was fibromyalgia, making it difficult to lay down, and coccydynia, making it painful to sit up. There were weird rashes and a new case of CRPS in my right arm and hand. I developed allergies to medicines, pets, and most of nature it seemed.

Slowly I stopped riding.

Slowly I stopped shopping.

Slowly I stopped cooking, cleaning, or entertaining.

I even stopped driving myself if I could help it.

My cane became two canes. My insurance wouldn’t approve my blocks. To get through the school year, I broke down and ordered a metallic purple walker. Over the summer, I underwent spinal cord Implant surgery. The electrodes allow my spinal cord to ignore some of the pain signals.

Now, I can walk more without the walker. There are hidden aspects of this bionic miracle, though. I have to hook myself up to a recharger for a few hours once a week. I still have edema and color changes and spasms. I can’t tolerate the sensations all day, so I “turn myself off” after work.

In short, though I “look better,” I still have CRPS.

So in honor of Invisible Illness Week and Pain Awareness month, I’m making a statement: I’m still fighting, and I refuse to be invisible.

That’s why you’ll see me with purple hair.


Find this story helpful? Share it with someone you care about.


Related to Complex Regional Pain Syndrome

young woman looking at the city

It’s OK Not to Be OK

I’m not OK. It feels really gratifying to type those words. The secret is out. The burden lifted. I can breathe a little easier. After a long week of pretending to be OK, I’m exhausted. I’ve lived with reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS) for 12 a half years now. I’ve [...]

Why I Can’t Stop Watching Competitive Sports as Someone With Chronic Pain

They stick the landing. They touch the pool wall edging out their competition. They spike the ball. I watch with anticipation and feel a sense of relief as I watch their dreams come true. I tear up knowing the hard work, sacrifice, determination, and luck it took to get them there. Nearly every athlete is bandaged, taped up, [...]
digital painting of girl sitting lonely in the moonlight, watercolor on paper texture

When Chronic Illness Changes Your Life in the Blink of an Eye

You never know just how quickly things can change until it happens to you. Going into my volunteer trip to India, I saw myself as a happy, healthy individual, but when I was taken to the ER on my last night there, not being able to move my swollen and extremely painful left leg I had no idea [...]
Nora Wagner on her high school graduation day

What It’s Like to Be in High School With an Undiagnosed Condition

My freshman year in high school will always stick out in my mind for more bad reasons than good.  Like many students starting high school, it was a rough transition: meeting new friends and teachers, learning to navigate a new building and trying to find out just who you are. For me, it was even [...]