Living With Alopecia: It Is More Than Just Hair Loss

Shutterstock/Pimnana_01
Shutterstock/Pimnana_01

January of 2010, I was a freshman in college getting ready to start my second semester at a local community college outside of Philadelphia, PA. I had just got home from visiting friends at the Naval Academy when my mom noticed a dime-sized circle of hair missing right off of my part. I thought that I may have burned my hair from a straightener or potentially there was a problem with the hotel and I caught something, but after reaching out to the people I was with I realized that there was something actually wrong.

A few days later, I got tests done at the doctor’s office and the doctor told me there were 3 things it could be; diabetes (which runs in my family), cancer or Alopecia but I should go to a dermatologist for a second opinion. I made an appointment and a finally got some answers.

January 28, one week before my 19th birthday, I was diagnosed on the spot with Alopecia- specifically Alopecia Areata. Not really sure what was happening, what to expect or even what Alopecia was. The doctor took the time to explain to me that Alopecia is an autoimmune deficiency where the immune system attacks the hair follicles, causing hair loss all over the body. There are three types of Alopecia where patients lose hair all over the body (alopecia universalis), all over the scalp (alopecia totalis) or lose in patches (alopecia areata).

People can get alopecia at any age and there is no set cause as to how alopecia starts, some say stress while others believe that I could be hereditary since it is an autoimmune disease like diabetes. Since there is no set course on how long alopecia stays or how the body reacts to treatment, no two stories about alopecia are the same.

Starting the first of many treatments, the doctor shot 5-6 shots of steroids into each spot across my head (first round was 30 shots). The shots are to shock the follicles to get them to start growing again in that area, for some the hair may never grow back while for others it could grow back after the first treatment or after a few. After 4 weeks, I went back and got another round of shots into those spots…this went on for 8 months. During those 8 months I started to lose the entire right side of my hair and the tissue under the skin where you could see the indentation of my skull. Here I am at 18-19 years old, wearing hair pieces and hats/headbands to hide the fact that I was balding.

The emotional stress it put me under, I cannot explain. I felt ugly and felt that if the guy I was crushing on knew what was really going on under my hat then he wouldn’t want to be around me and my friends wouldn’t want to be my friend. I felt alone. I felt that no one understood what I was going through. I was always scared to tell my story because I know the judgment I would receive- things like, you are overreacting it is just hair or it is not that big of a deal. Well maybe to you it is not a big deal, but for me, it is.

Now-a-days appearance is everything, what you wear is everything… they say your hair is your best accessory and half of it wasn’t mine. I did try to open up about it and walk outside of the house showing my spots but I would get looked at like I was an alien from outer space walking through the store or I would hear someone say “what do you think is wrong with her?” After the 8 months, most of the hair grew back and the doctors stopped this set of treatments. What was next? Can I try to prevent it? You can’t. I just had to wait.

Months went by and I didn’t have to have treatments until about a year later when I had a small spot again in the area I lost the first time. For some people alopecia never comes back but for me it came back, just not as strong. I went through 4 more months of treatment to close out the second time that I had been diagnosed and again I didn’t have it for months and months. I went on to have 3 more set of treatments ranging from 3-7 months over the last 3 years. I was losing/shedding hair like there was no tomorrow. It clogged the drain; it was all over the shower, the bathroom floor, my bed. I was losing hair left and right.

I walked across the stage at Miss PA USA in December of 2013, in the middle of one of my set of treatments. I was so worried that the judges would see it and ask a bunch of questions that I wasn’t ready to answer. I was anxious that the beautiful girls I spent the weekend with were going to see it and judge me. I couldn’t use hair extensions because it would pull on the hair and I couldn’t use too much product because of the chemicals. I had to come up with a way to feel my best while hiding the spots that I felt were so noticeable.

Now just over 5 years from my first diagnosis, I went to get a haircut and the hairdresser found three spots on the back of my head so here I am starting my 6th round of treatment at age 24 and I am ready for people to know what it is like living with this deficiency. I am telling my story to bring awareness since many people don’t know what it is or never heard of it. What people don’t understand is that after this round of treatment I could wake up 6 months from now and find a spot or I could wake up 6 ½ years from now and find a spot. I don’t know when the next spot is coming but I can be prepared when I find one.

Although many people think it is just hair loss, the emotional toll it takes on a patient can be extremely tough causing many to have self-esteem issues. I remember not wanting to get my pictures taken or sometimes to even go out in public because I felt that people would look at me and know that I was wearing hair pieces. Although, I am still very conscious about how I do my hair, what products I use, how much heat I apply, etc. Alopecia is always on the back of my mind. I see a spot and begin to get discouraged because I know the physical pain and emotional pain the next few months are going to cause on me. To you it is just hair, but for me it is my life.

I could not have gone through the last 5 treatments without my family and friends but mostly the National Alopecia Areata Foundation family. They have given me the tools to manage my hair loss, the hair pieces, support groups to speak with and brought a group of people into my life that made these last 5 years a little easier. I know that this will be a part of my life forever but I know now what it is going to take to manage it the best way I can. TC mark

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