Alopecia is something you don’t normally talk about which is why this post has taken me weeks to write (literally). I started writing this 5 times before, until I found myself deleting every single draft. I initially wanted this post to be out in September in honor of Alopecia Awareness Month but in all honesty, I was scared and nervous. This disease is something that was a big part of my life and I know so many people suffer from it which is why I finally had the nerve to go public with it. This won’t be a formal blog post– more so a journal entry because to be quite frank, I have no idea where to begin. All I know is that people suffer from Alopecia just like I do and I want to bring awareness and light to the disease. In my Accutane Journey post, I mentioned how my hair was falling out and it was the worst side effect that had hit me since I started Accutane. After that post went live, I got two texts from two FRIENDS who suffer from the same disease. I was more so shocked because 1) I’ve never met anyone else who suffers from Alopecia and 2) both are friends of mine yet I had no clue they have been through the same thing as myself. After talking about it for some time, one of my girlfriends said, “you’re not alone”…My heart was heavy, happy and oddly, very comforted. Those words were the most reassuring ones I’ve heard because I’ve never met anyone else who agonized the psychological pain that came with Alopecia.
Alopecia is an autoimmune disease that doesn’t discriminate against age, men or women. Normally the immune system protects the body against infection and disease. In an autoimmune disease, the body’s immune system mistakenly attacks some part of your own body. In this case, my immune system was attacking my hair follicles. They say that alopecia could be genetic or stress induced…No one in my family has the disease and the fact that I suffer from chronic anxiety told us exactly where it came from in my case. There are 3 types of Alopecia– Alopecia Areata, Alopecia Totalis and Alopecia Universalis. Alopecia Areata is the most common with round bald patches around the scalp, Alopecia Totalis is rare but not uncommon which results in total hair loss of the scalp and Alopecia Universalis is the rarest form and results in complete hair loss ALL over the body. In a way, I’m thankful that I suffer from Alopecia Areata.
Not one single person in my family suffers from Alopecia so it was quite the shock when my hair started to fall out. At first, the shower drain would be filled with hair, which wasn’t anything new. Being Indian, I have long and thick hair; drains being clogged weren’t out of the ordinary. Slowly, I started to notice how much hair was stuck in my hairbrush, it wasn’t the average amount– It was a bundle of hair with the hair follicles still attached to each strand. A couple of days later, my pillowcase started to fill up with my hair. I noticed these patterns of my hair falling out within a week and a half. It wasn’t until I was styling my hair in a tri-fold mirror and noticed a teeny tiny bald spot on the right backside of my head. I immediately told my mom and she told me it was nothing to worry about. I agreed. Only after 2 days, the spot grew. I convinced myself I was psyching myself out OR I somehow magically was shaving my armpit and nicked myself on my scalp…Yea, I was full of excuses back then. The spot went from a dime size, to the size of a golf ball within 2 weeks. I went to a couple of doctors around the area. No one really knew what was wrong with me. Some said I had a fungus infection and those doctors deserve to have their license revoked because they were far from right. A close family friend’s friend who was a dermatologist in St. Louis asked to see my pictures and quickly diagnosed me with Alopecia Spring of 2009. Once I got the name of the disease down, my research on the Internet would NOT stop. It was a horrible, horrible time. I was going to lose all my hair, I had cancer, I need to buy a wig or I look ugly were only some of the falsely made up thoughts going through my head.
Immediately my parents bought a plane ticket for me to go and see that dermatologist. I was told to not put any type of hair product or heat in my hair due to further damage. I was also told Alopecia is treatable but has NO cure. I was devastated and my heart was so heavy. I’ve always been blessed with luscious locks and overall I was healthy…nothing at the time made sense to me. My doctor told me that I could take steroid shots in my scalp to speed up hair growth if I wanted. Of course I wanted to. Immediately the time-consuming process began. I could easily get my father to give me the shots but I simply didn’t want that. I wanted my dermatologist who diagnosed me to inject me since he had been the only person out of so many that was aware of what I was going through. Honestly, I was being difficult. There was absolutely no need for me to fly down to St. Louis every 2-3 months for steroid shots but my parents did exactly that for me and I’m so thankful.
During my first year of college, I was pretty much borderline depressed. Wouldn’t you be as well? I didn’t feel good about myself, I didn’t feel “pretty”. I hate saying that because I know for a fact that beauty isn’t defined by the exterior. I had always wondered, why do I care about my looks that much but soon realized that wasn’t really it. It was the fact that I stood out in a different way. My best friend had to come over to my dorm from time to time and fix my hair in a way that didn’t show my white scalp. She would constantly keep an eye out while we were in public if my hair had fallen out of place. Suffering from Alopecia is not painful physically. It’s more of a psychology pain. I was somewhat grateful in that manner. I would think to myself, “at least I’m not in pain or hurting” but the emotional toll it took on me was severe.
Unless you suffer from Alopecia, you have no idea how it feels and never will. It’s something very hard to deal with and still is. My hair has grown back with the help of the steroid shots. It took quite a few months to grow but it definitely did. The hair that grew back was very fine-like similar to a new born baby’s and an off white color. I was scared I would have areas of my hair that was solely white but my color came back within time.
Every individual handles these types situations in different ways. I grieved by myself most of the time and sometimes with my family and only 1-2 friends. I couldn’t bring myself to tell other people because it was a very emotional time for me…it still is. Talking about it helps but only to some extent. My family didn’t treat me any different nor did they give me any type of special attention… that definitely helped a lot. I know my parents were VERY worried about my condition but being in an environment where I was treated the same as before gave me reassurance that I will be okay.
I completely stopped using any chemicals in my hair. I stopped fixing it with heating tools. My hair was natural over the course of 2 years because I didn’t want to risk losing my hair again. Many people ask me why I take such good care of my hair/skin and this is exactly why. Whether you have Alopecia or not, I think it’s important to be careful what you put on your body. Harsh chemicals can easily travel through your skin causing them to react in a negative way. I started using a solid seaweed Shampoo from Lush that had no chemicals whatsoever. This is when I started being mindful of what products I use in my everyday routine.
For anyone who struggles with Alopecia, I know what it’s like and you most definitely aren’t alone. It’s something that is very difficult to live with but I wish back then, I had the mentality I have now. It may be the very fact that I went through it once- that I am stronger and know what to expect. It could be that I’m wiser and I really don’t care what people think of me. Regardless, for those of you suffering, things do get better. Whether you believe it or not, they do. Here are some of the things that helped me get through this difficult time:
-Having someone to talk to. No matter how close you are to someone, speaking of alopecia is hard. Even now, 4 years later, I never really told many people until now. I had my sister, parents and two other people who I talked to.
-Using paraben and sulfate free shampoo/conditioners were a must for me. As much as I hated the “no lather” shampoo, I was strict with what products I used. Lush shampoo and conditioners were my saviors during this time. As I always say, don’t put unnecessary heat on your hair. I pretty much never straightened my hair when I lost my hair, which was very difficult for me because straight hair was the thing back then. I felt like I was somewhat immature back then to be honest. I was a freshman in college and really cared about how I presented myself /how people perceived me as.
-Do NOT go on the Internet and Google pictures of Alopecia. Oh my God. I spent HOURS looking at horrid pictures of what my scalp may look like one day. I was constantly researching information and crying hoping that I would never see the day I lose all my hair—it never did. It was a waste of my time and made me even more depressed than what I already was.
-Exercising helped me so much. My chronic anxiety/depression needed my body to be active and healthy. It’s something that’s very important no matter what.
-Don’t give up hope and surround yourself with people who are supportive. I wasn’t in pain…I lost some of my physical features but honestly, who cares? You’re the same individual as you were before you lost your hair. I’m writing this post after 4 years of losing my hair. It’s still hard to talk about and my mentality sure has changed but if there is one thing I would tell myself back then it would be that no part of me had truly changed even though I felt like it.
When my hair started to grow without any spots, I was thankful and made a promise to myself to donate my hair to an Alopecia foundation. This past summer I decided to finally cut 11 inches off in regard to Alopecia. Unfortunately, a year ago I had gotten highlights which hadn’t grown out and the foundation doesn’t accept color treated hair. I donated to Locks of Love because so many people could benefit from it. For those of you who have the hair to donate, do it. It’s a simple act of kindness and I will continue to grow out my hair only to cut and donate it again.
I’m a little late posting this because I was nervous. I didn’t want to post pictures but pictures really grasp the readers’ attention and I want you all to see what Alopecia Areata is and how it affected me. This is probably the worst and most difficult time in my life. These pictures were for my own personal use. Just like my Accutane post, I never would have thought I would be sharing these otherwise they would be a little more professional. I also apologize for the unclear photos, I obviously didn’t know what HD was back in the day! 😉
This one giant spot was previously 2 individual small bald spots.
This picture was taken after a couple of months taking the steroid shots. I was pricked with a 3 inch needle about 6-7 times. So scary but obviously it was worth it as you can see the hair growth!
These were two new spots that formed in the parting of my hair. Thank God they never got bigger.
Look at all that hair now! (picture taken this past summer) See, there is hope! 🙂
Here is the National Alopecia Foundation site if you would like to learn more.
If you all know of anyone who has Alopecia, comfort them. That’s all they need.