Hello readers! If you came from “Simply an Archive: Manifesting My Own Death”, welcome, and if you didn’t, you may want to read that post first.

 

Recently, I told my roommate that I have Lupus, and she said, “Like Selena Gomez?” And I laughed and said, “Yes, like Selena Gomez.” 

 

Celebrities like Selena Gomez, who I grew up watching on Wizards of Waverly Place; Seal, who sings the bop: “Kiss from a Rose”; and Toni Braxton, who sings the bop, “Un-Break My Heart” have spread awareness of the autoimmune disease that is Lupus. And Lupus awareness is so important because it allows others to identify symptoms of the illness earlier, and you’ll understand the importance of this as you keep reading.

 

It is May, cue the NSYNC song (iykyk), and for those who MAY not know (see what I did there?), May is Lupus Awareness month. I wanted to devote one of my first blogs to writing about something close to my heart. Writing about my illness has helped me accept my reality and heal the hopelessness I’ve felt, and sharing my story is my way of spreading lupus awareness.

 

If you read my introduction, then you know that 3 years ago, I attempted to launch this blog, and now that I have (finally), I get to share with you a blog post I wrote for you nearly 3 years ago but haven’t published until now. 

 

I hope you’ve got your glass ready…

 

08/15/2021:

 

“Hormones kicking in. Getting your period in class. Having that awkward “talk” with your parent(s). Running to the hallway or cafeteria to see a fight. Loving or loathing picture day. What do these things all have in common? Well, if you’re like me, these things probably all happened while you were in middle school. Middle school, to me, was, as Dickens would say, “the best of times and the worst of times”. The best times were all the lame and cool shit that we cared about that made for some of the best memories, sleepovers every weekend, awkward yet electrifying first kisses, field trips, girl gangs, etc. The worst of times were fights with friends, cramps, group work with freeloaders (they know who they are), missing the bus and then getting in trouble, so on and so forth. 

 

Worst of all for me was class presentations. For instance, one day I had a presentation in English class. It was a short presentation, but I was still nervous. The teacher called my name, I stood up, and as I made my way to the front of the class, I suddenly stiffened up. The feeling was and still is hard to explain, but I simply could not move no matter how hard I tried. I couldn’t move my hands, my legs, my face, and I stayed stuck unable to escape this temporary state of paralysis. Finally, after 20-30 seconds, I was mobile again. I looked around and saw my teacher and my classmates looking at me with looks of concern. I didn’t know how to explain myself, but luckily my friend swooped in to save the day. She told everyone that I was just super nervous, and our teacher allowed me to skip my presentation. I was indeed nervous, but what happened to me was much more than nerves. 

 

I convinced my mom to take me to the doctor, whose only advice was to “eat more vitamins”. But the vitamins did not stop the symptoms from occurring. I tried to control it the best I could, and after five years, I finally found out the name of my mystery illness. I have Systemic Lupus Erythematosus. Living with Lupus has not been easy. Sometimes I go days without any symptoms, and sometimes they occur as often as every 30 minutes. The symptoms are always the same for me: stiffness or joint pain. I’ve had so many moments where I felt so helpless and alone being the only person I know diagnosed with this illness. However, writing has been a wonderful outlet for me to cope with Lupus. I get to express my struggles in a way that helps the world understand Lupus better and me better.

 

…

 

To say my life hasn’t been the same since my diagnosis is an understatement. It was tough living five years with symptoms without medication or a diagnosis, and it was equally as hard having the diagnosis and not being able to afford my medication when I lost my health insurance after my divorce. 

 

I think the thing that bothers me most about my illness is the embarrassment I feel when I have a flare in front of people. I’ll never forget the look on my friend’s face when I had a full-on flare in front of her while standing in the kitchen of the townhouse I was renting. She stared in horror at my scrunched up face and told me that she was scared. After the flare subsided, I reassured her that I was okay, and then I walked to my room where I proceeded to cry. 

 

Having any invisible illness is tough because no one knows what you’re going through or how much pain you’re in, and when they see or find out about it, they are in shock. They don’t realize the battle it takes to live a seemingly normal life while struggling, fighting the inner battle that is having a body that rebels against itself. 

 

However, day by day, month by month, I learned to control my symptoms and I ultimately figured out how to take care of myself. And while I dread having a chronic illness, and I have longed to be “normal” or just healthy, I’ve come to find peace knowing that my illness isn’t what makes me me, but it is part of the reason I am the way I am. Who knows if I’d have the courage to live a life true to myself without the fear that my life will be shorter than expected. It is this reality that has made me more willing to take a risk, more willing to dream big. And with dreaming big, I’ve learned to be disciplined while living with Lupus, which is ultimately why you are reading this blog. Like 18 year old Janyce said, “I just don’t want to be able to say I never got the chance to… for anything”.

 

Would I wish away Lupus if I could? Hell yes! You know how many times I wish I could’ve donated blood or plasma. You know how many jobs I would qualify for if I didn’t have this illness. But, this is my reality, and ultimately I am not a Lupus-ridden woman. I am an effervescent, black woman who happens to have Lupus. 

 

If you have a chronic illness, mental illness, or any kind of struggle I hope you find comfort in knowing that you are not alone in your struggle. You have me, your fellow readers of this blog, all your loved ones, and most importantly…you. You are your #1, your ride or die, so take care of you boo!

 

My name is Janyce-Monique and this is Simply Doin’ the Most. Thank you for reading and know that I’m rooting for your wellbeing!