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My Hair!: My Story of Loss

August 6, 2014

In 2010, I was a newlywed and had just graduated with my Master’s of Public Health degree, but life was anything was blissful. My body had been in physical pain for more than a year and I wasn’t finding relief, even with New York City medical care. The pain forced me to move across the country, to my hometown, and see seek treatment at the Mayo clinic, spending six months away from my husband. After trying every oral or IV drug under the sun, a lumbar puncture finally yielded a definitive diagnosis: Idiopathic Intracranial Hypertension, a condition that causes excess cerebral spinal fluid, creating pressure in the head, neck, and shoulders. But despite the diagnosis, my pain was far from over.

 

My body was slipping away, right along with my self-image, and I was forced to accept the changes. Completely bed-ridden, I couldn’t do anything or go anywhere, and sometimes I couldn’t even stand long enough to shower. Days were filled lying in bed in pain. Then my hair started falling out. One day, I noticed clumps of my blonde locks everywhere. Almost overnight, I could see my scalp through the thin sheaf of hair remaining. I burst into tears. I was known for my super thick hair. Who was I, without my hair?

 

None of the doctors could explain the hair loss because of the many drugs I had taken. But without knowing the cause, how would I know if my hair would come back? My body felt out of my control and I was terrified of this mystery illness.

 

To add insult to injury, my skin was shedding, coming off in layers. Again, doctors couldn’t explain it. My fingers and toes became repeatedly infected with staph, despite rounds of antibiotics. Even when toe surgery was necessary, all I kept thinking about was my hair. I didn’t know who I was without it. During rare moments when my pain was manageable, I could have left the house but didn’t dare due to my hair. My family finally pushed me out into the real world, and I felt like everyone was staring at me. I pulled my very thin layer of hair back in an attempt to cover the bald spots.

 

I didn’t have the guts to shave my head and stand tall like other women with illnesses do. My hair was one of the few things I liked about myself. I felt bare without it and couldn’t blend in with the “regular” public. Isolated at home, I became more and more insecure about the physical changes wrought by my illness. I refused to see friends because I couldn’t bear to be seen hairless, immobile and heavier than ever, thanks to medications that caused weight gain. I felt like my entire appearance had fallen apart and I was miserable. My family confronted me about my isolation, questioning what was pain and what was depression. At first, I was angry and didn’t want to talk about it. I was sick and that was that. However, I soon realized they were right. I was hiding from illness when I had to be strong and face the world beyond my bed—whether or not I had a thick head of hair. Even though I didn’t recognize myself when I looked in the mirror, my family convinced me that I was still beautiful. I took the physical and emotional pain one day at a time; it was all I could do.

 

After losing my hair, growing it back required more patience than I had. In an effort to speed up the process, I took biotin and used every hair thickening shampoo on the market. The hair products were useless, but biotin worked for me. Hair was growing back everywhere I lost it—head, eyebrows, legs, armpits—and I was happy to get back into a shaving routine. The biotin did not work overnight, though. It took a full two years to get my hair at 50 percent of what it had been. Little hair sprouts stuck out everywhere and drove me crazy. Too many people told me my short hairs came from breakage and urged me to take better care of my hair, never considering I had suffered medical hair loss.

 

In 2012, with my hair looking so much better, my illness took a turn for the worse and I needed brain surgery for shunt placement. Multiple neurosurgeons wanted to shave two two-inch patches, one on the top of my head and one on the right side. Just as my hair was looking lush again, doctors wanted to take it away from me. I knew I needed surgery, but I didn’t know how much more I could handle. Luckily, the fourth neurosurgeon I consulted was the most familiar with shunt placement for my condition and said he would trim only small pieces of hair. My first words out of surgery were: “How’s my hair?” It might seem shallow to those who haven’t been there, but when you’ve lost everything, you find yourself clinging to small parts of yourself. My hair was fine as promised, and even after a second surgery and another trim, it was still better than it would have been with the other doctors.

 

Surgery did not cure all my pain and problems, but it was an improvement. I continue to work with various medications and doctors to regain my mobility, functionality, and manage my pain. Now, in 2014, my hair is long and fully-grown back. Underneath my hair, I feel the bumpy spots on my head were the shunt is. I’ll never forget what I went through and what it took to reclaim my hair. I may never cut it short again! When I see a woman with a shaved head, I think she is strong and beautiful. I never know if she cropped it close by choice or not, but it always feels like a win for unconventional beauty.

 

If life forces you to give up your hair, remember to hold your head up high. You are beautiful and your hair is just secondary.

 

See yourself for who you really are, Thrivers!

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