Lupus Story

What It’s Like to Lose Your Hair at 19

This isn’t the first time I’m talking about what it’s like to live with an illness. I’ve spoken about it as a speaker in talks to getting interviewed. I’ve even talked about it with someone curious about Selena Gomez’s famous disease, which I experienced first-hand, too. You see, I was diagnosed with Systemic Lupus Erythematosus or most commonly known as Lupus last 2015. It’s a chronic, auto-immune illness where my body’s immune system attacks its own tissues and organs, both the good and the bad cells. It is also known as “the great imitator” since it can imitate any illness until a test proves that it is indeed Lupus.
What started out as muscle and joint pains ended up as pneumonia and rashes on my cheeks, which the doctors called nephrologist, and later on, diagnosed as the big L. During my two-month stay in the hospital, I experienced a ton of scary illnesses—from having water in my lungs to my kidneys and liver almost shutting down. I even had to get a bone marrow aspiration and multiple blood transfusions among other medical procedures. But somehow, I managed to pull through with the help of my doctors, family, and friends. Lupus sounds scary because for most people it’s still a mystery and based on my personal experience, it’s horrifying. But while I was emotionally prepared for my medical battle, I wasn’t quite prepared for the aftermath of my war with Lupus.
When I was finally allowed to go home and recover, I had to go through a treatment that’s similar to chemotherapy in order to keep my immune system stable. I was happy to be home despite having to follow the doctor’s strict orders. But as my body continued to recover, my mind wasn’t quite ready yet. There were a lot of things that I couldn’t do and I couldn’t wait to go back to my old self. It broke my heart when it hit me that while I may be alive, I wouldn’t be able to live my life because my condition didn’t have a permanent cure and I have to be vigilant about my health at all times. Of course, losing my hair as an effect of my treatment took a huge toll on me, too.
Every morning when I woke up, I would see strands of hair all over my pillow. At first, I brushed it aside since it was normal for girls to have falling hair, but I noticed that my hair was growing thinner by the day and I was losing more and more locks. Eventually, my mom told me that I might have to shave my hair completely because of the chemo and the meds that I was taking. That realization hit me like a ton of bricks. I love my hair long and I’ve kept it that way for as long as I can remember and having to shave it all off broke my heart.
I was in denial for the longest time up until a big chunk of hair suddenly came off from the right side of my forehead.
Growing up as a model, it pained me to have to take a backseat from what I loved to do—my dream—because my lifestyle was heavily restricted and all my hair was falling off made me feel conscious about how I looked and made me lose my confidence in the process, too. When I finally agreed to have most of my hair chopped off, I looked into the mirror one last time and promised myself that once I’ve overcome this roadblock in my life, a new me will be on her way.
It took a couple of days getting used to having very little hair on my head. I’ve always had an elaborate hair care routine so it was a big change to suddenly go all low maintenance. When my mom finally allowed me to go out and go back to school, she asked me if I wanted to wear a wig. Although I missed my long hair really bad, I felt uncomfortable going out and about with a wig on. I thought that while it was good to maintain my old look, it’s better and stronger for me to accept my current situation and not hide or feel ashamed about my current look. While a bald head and various scars may look scary at first glance, for me it showed my strength.
They were my battle scars.
It wasn’t easy to go back and see all my pretty friends going out and having the best time of their lives while I was stuck at home recovering and trying to gain my confidence back. It hurt to be jealous, but I had to have faith. I know that one day I will be okay again and I just have to stay positive in order to get to where I want to be me.
It has been two and a half years since I got sick and lost my hair. Now, my hair is back to its long glory and I actually just had it dyed! My scars have healed and I feel healthy both physically and emotionally again! Acceptance starts from within and while I may have taken the long, hard road of self-pity and feeling broken, I can confidently say that my battle with the big L definitely made me into the strong, empowered woman that I am today. I’ve always been confident about myself, but going through my tough medical journey has shed a new light on what really matters most in life: to stay real and create our own version of what’s beautiful.

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