Dear September,

Sunscreen, shades and a cap, these are the things I always try to have with me whenever I would go out. If it was an extra sunny day maybe I’d bring an umbrella too. I try to avoid the sun as much as possible because being exposed to it for too long can make sick. I know what you’re thinking and you’re correct. Yes, I’m a vampire.

Just kidding.

Actually I’m one of the many people on earth who has lupus. I use the term “many” loosely because most people aren’t even aware of this disease. I think it only started getting attention recently.

I was about to start second grade when I had a fever that lasted for about 40 days. My family brought me to multiple doctors and they all had a different diagnosis for me. One even thought I had cancer. I got better and went back to school like nothing happened. Then when I reached the fourth grade I started having a butterfly rash across my face and after a couple of tests they found out I had a form of lupus. I won’t bore you with the details, but basically my immune system is weak and my good cells are blind. They attack the bad cells (which is their job) but they also attack other good cells.

Needles… Looking back I can’t think of a time when I was afraid of them. I think I’ve gotten so used to the process at such a young age that I’ve become numb to the whole thing. Blood tests became part of my routine and I could do it on weekends and my friends wouldn’t have to know.

Medicines… I had a harder time with this one. I was fine with taking them but I couldn’t stand the side effects. They would make me gain weight, my cheeks would get fatter and would sometimes cause minor hair loss which I covered up by always tying my hair. These are all very trivial things compared to the real dangers of lupus but for someone who was growing up, what I looked like was starting to be a big deal for me. Luckily I was active in sports and I didn’t gain that much weight except for my cheeks.

Doctors… I hated having to miss school for my appointments. Going to the doctor made me feel like I was different from my friends and I didn’t want to be different. Whenever she would ask how I was feeling my trademark answer would always be “I’m fine”. I became so good at pretending, I was her “poster kid”. A shining example of how you can have S.L.E. and still live a normal and happy life.

Sun… This one broke my heart when I first heard that I had to avoid it though I never really told anyone about how I felt. I love the sun and I love swimming so hearing that the sun was bad for me was a big blow.

Rashes… They began appearing again when I was in high school. They were one of the symptoms that meant that my sickness was acting up. I hated them and would cover them up with different foundations. To make me feel better, someone I was with at that time would always affectionately call them stars and say that they formed constellations on my face. Tip to anyone reading this and is dating a teenage girl who has rashes… this does not work at all.

The next one I’m not sure if I should even mention it. I don’t want to give anyone any ideas. But seeing as this is an important part of my story here goes…Test results… I hit the late teen years and I became even more self-conscious about how I looked. The side effects got to be too much for me sometimes and with the world showing a cookie cutter image of beauty I learned to alter printed blood results so that my doctor would give me less medicine or none at all. I could pretend that I wasn’t sick and I guess pretending for me felt better than accepting it.

Rest… Growing up I tried to stay as active as possible. Spending long hours pushing my body was just part of proving to everyone around me that I was fine, I didn’t need to rest. I wasn’t sick.

At that time these things felt like big adjustments that I had to get used to and the pattern I seemed to have exhibited as a child was one where I would try to pretend that I wasn’t sick. All the makeup, training and fake results were really just because I didn’t want to accept that I have lupus. I didn’t want to be the sick girl. I didn’t want to be different.

I was ashamed to share this with anyone let alone post it because the worries I had while growing up seemed very immature. The things I focused on weren’t even the important ones like losing a kidney or dying, but as I recently learned from someone I respect very much all our feelings are valid. My concerns then might be petty now, but during those stages in my life they were important to me.

I wish I can tell you that I grew out of being in denial. There are still times when I feel hopeless but most days I’m truly fine. I am just so grateful for everything. I’m still physically active. I am very lucky that my sickness is still under control. I was so scared I wouldn’t be able to swim anymore when I was first diagnosed and I’m happy to say that I can as long as I take the proper precautions. I even joined a triathlon team last year and we can’t wait to race again together once this pandemic is over. Having lupus doesn’t mean that my life has to stop, it just means I can’t get a tan naturally… spray tans are a thing right?

This was a summary of my experience growing up and being in denial. I put my health in danger trying to pretend and fit in. Honestly, when I finally told my friends they all showed their support but they didn’t treat me differently. So to anyone who feels alone, please know that the people who truly love you will understand and accept you no matter what. You don’t have to open up right now, but don’t assume anything without giving people a chance… they might surprise you.

Love and Light,