Every day’s self-image struggles of living with forgotten disease creates ups, downs

By: Mercede Kraabel

It’s 12 at night. The sky has been dark for hours, and my mind has only been dark with thoughts for little over an hour. Not the good thoughts that I usually have, but the darks ones, dark thoughts about myself. The thoughts that I had were the usual: I’m ugly, I am not beautiful, nobody cares about me and so on.

I needed someone to talk to, so I texted my best friend. I told him what I was thinking. He told me that I was wrong, and that I was beautiful, but I still didn’t think so. He said that nobody has really ever told me that I was beautiful. Now that made me feel a little bit better. We talked for a little bit more while I was watching a show on Netflix. The next thing I knew, it was after one in the morning, and I fell asleep. The next morning I slept in, and I felt a little bit better. And as the day went on, I improved even more, but I knew that I still had a long way to go.

Most girls my age or any age have their hair, but I don’t. I have a disease called Alopecia Areata. It’s the forgetten disease. Alopecia is where the immune system attacks the hair follicles and makes the hair fall out. You can’t tell when it will fall out or grow back. It’s very random.

There are a ton of people who have this, both men and women, but it mostly happens with women. You would think that for how many people have it, there would be a cure for it, but there is no cure for it. However, there are treatments to help it.

Even though this is a disease, I am in good health. I don’t have cancer, so if you ever see me or anyone else without hair, don’t ask if they have cancer. If you do, that will most likely make them mad. There are a ton of reasons why someone might not have any hair.

I have struggled mentally and emotionally with this for some years now. There would are days when I feel happy with myself and about myself. Then there are other days where I feel down because I am around people every day who have their hair, and I don’t.

It was around the time I was in fourth grade that I was diagnosed with Alopecia, but I had little bald spots since I was four. I think it was easier for me to handle back then because the kids who were in my class I pretty much knew since kindergarten. I had gotten to wear hats in school because of it, both in elementary school and at the junior high.

When I got to the junior high, it was difficult for me because there were kids that I didn’t know. I thought that I would get made fun of for not having any hair. Then I soon learned that there were nice kids there, and I made some new friends.

Even though I have made great friends over the past few years, I still get upset about my condition. When I was at the junior high, during the passing period, I would look at the other kids in the hallway, and I would think that they are giving me bad stares. It was like they didn’t want to see me, but I would only think that on the days when I would feel bad about myself.

I feel like all my worries started on the first day of junior high. Everyone there was so nice about it. I felt like they felt sorry for me.

At first, I wanted people to feel sorry for me because if they did, then I thought they cared about me. But in the 10th grade, I realized that I don’t want people to feel sorry for me. I hate it when people tell me that they are sorry because then that makes me feel like they know what I’m going through, but they don’t. Nobody knows what I am going through unless you yourself have gone through it. I feel that what everyone does is try to make sense of a situation that they haven’t gone through, but no one knows what it is like to be me.

Now, a year later, I really don’t care what people think of me. Yes, I will always have bad days. I hope there will be more of the happy days and less of the bad ones, but everyone has to have bad days just to love the good even better.

If you look at me at school, at the store or wherever you see me, you wouldn’t think that I have this disease because I wear a wig. Even some of my closest friends didn’t know I had Alopecia because I wear the wig.

I have been wearing a wig since this past March, 10 months and counting. This was the first wig I have ever had. I had never wanted a wig before, but last time when I had almost lost my hair again, I knew I was gonna miss having hair, so I decided to get a wig.

When I had first gotten my new wig, my best friends were saying that it wasn’t me and that they love the person I was, with or without hair. When I heard that, I was happy, but even so, I still had wanted to wear the wig.

I have always loved my hair. When I didn’t have any hair, I would miss it. I missed feeling it when I swam in the pool, and I missed having to put it in a ponytail. It was one of those things that you don’t know how much it meant to you until you lose it. It was the same way with my hair. I also didn’t want to deal with the questions or the stares anymore. That was the reason I wanted to wear a wig.

I know now that the other reason why I wanted to wear a wig was that it helped me. It helped me to realize that I didn’t care if I have any hair or not.

I haven’t had any hair since this past March. I started to count the months until it started to grow back. It was seven months, and then it started to grow back in September. I have some hair now but not as much as I wanted it to be. It has never taken this long before to grow back.

I am still wearing the wig, but very recently I decided that if my hair didn’t grow very much before spring break, then I would shave it off or not shave it all off and stop wearing wigs. I will go back to just wearing hats. I know that when spring break comes around I may decide to keep wearing wigs. I really don’t care anymore if I wear hats or wear a wig. I don’t care if I have hair or don’t have any hair.

Having Alopecia is the best thing for me. If I didn’t have it, then I wouldn’t know who I would be today. All my thoughts about the world are because of having Alopecia. I try to stay positive about everything and anything. I don’t judge people because of what I’m going through. I try to treat everyone with kindness and respect, but if you don’t treat me the same, then I won’t treat you with kindness and respect.

I also see beauty differently than other people. The definition of beauty in the Merriam Webster Dictionary: the quality or aggregate of qualities in a person or thing that gives pleasure to the senses or pleasurably exalts the mind or spirit. In my mind, the definition of beauty is this: everything that makes you, you. What you do, who you are. Now in my mind, beautiful is what makes you different. Beauty and beautiful to most people are looks, but as I already said, they’re not.

I really don’t know who I would be today if I didn’t have Alopecia. I guess I wouldn’t see the world through the same eyes that I do today. I wouldn’t see flaws and the imperfections as perfect. There are perfect humans beings. Humans are perfect in their own little ways, with the flaws and imperfections. That is how I see the world, and I love it.

Every day, I have to fight with myself to keep going, to stay happy. Fight with myself to not feel alone when I’m with my friends. Fight with myself to not feel bad about myself. Fight with myself to not think that I am ugly when I am beautiful. To feel strong, to feel brave.

Now, you are probably thinking that I’m just writing this so you can feel sorry for me, but that’s not what this is. This is just me telling my story. Telling what it’s been like for me to live with Alopecia. Telling a side of the story that I don’t like to tell people. I am happy, but there are the times when I feel down about myself, but I will always have days where I feel down. This is something I will always be dealing with. I still have a long ways to go before I can ever truly love myself.