Denying My MS Diagnosis (Pt 2)


January 25, 2021

Denial: noun, the action of declaring something to be untrue. When I lost my vision again in July 2013, I instantly knew that going to the neurologist meant a diagnosis. What’s that famous saying? Ignorance is bliss. Well, I was in complete bliss about my health from July 2012 to July 2013 but, a big part of me wanted it to last longer. I need more time, I’m not ready to accept that I have this stupid disease. In the back of my mind, this was still a mistake–MS didn’t run in my family and all of a sudden it’s running rampant in my body? No way. I was okay denying my MS diagnosis because to me, it just wasn’t true.

Related: Symptoms & Diagnosis of MS (National MS Society)

I’m going to pause here to take a quick step back.

In August of 2012, right after I had the initial shock about me potentially having MS, I started talking to a guy named D who was in law school in South Carolina. We met in 2009 and he pursued me from that day on and in 2012, I finally decided to give him a chance with the caveat that I may have an autoimmune disease. It felt unreal uttering the words to him because I didn’t even believe it, but I told him anyway because I take a lot of pride in being honest (sometimes I’m a little too honest, lol). I was thrown off by his reaction–completely unbothered and still so into me. You sure you know what this means?? You sure you want to go down this road with me?? We made it official in September 2012 and exchanged vows in September 2015. He was sure.

D and I in 2013, I was denying my MS diagnosis at the time
D & I at the beach in 2013

Fast-forward to that July in 2013 when we were at our lowest, together. I put my “I’m a strong woman” pants on and went to the neurologist while D made his way to Baltimore to take the Maryland bar exam. I got home first that day, sobbing once again, bewildered, defeated and in complete denial about what the neurologist told me. Hours later, D joined me in bed with defeat in his eyes. “I’m 99% sure I just failed the bar.” Oh great! Come lay down and let’s drown together in our sorrows.

We made it through the summer but not without me constantly denying my MS diagnosis. I can’t tell y’all how many nights, mornings and even some lunch breaks I spent in tears. Like, the kind of crying when your shoulders bounce incessantly and your face is drenched like you just doused it in water. No matter how hard I tried, I couldn’t come to grips with this news.

That summer was also a teaching lesson for me and D. Every time I cried to him, he would tell me not to cry out of fear that it would cause a flare up. “Baby, don’t cry, it will make you worse.” I understood where he was coming from and did everything I could to hold the tears back until one day, my cup overflowed. When the optic neuritis made its appearance again, the neurologist decided to put me on steroids–5 pills per day for 5 days. I had never been on steroids until then so I didn’t know what they were capable of and how I would feel on them. I took them as my doctor prescribed and by day 3, I was another person. Insomnia and rage consumed me and, despite it all, I was still denying my MS diagnosis.

© Project Life Photography Brian & Melissa Powell

I kept telling D that I didn’t feel like myself. “It’s just the medicine, baby. You’re okay. Here, drink some water.” *Cue Roar by Katy Perry* For some reason, him telling me to drink water transformed me into the Incredible Hulk and I yelled SO loudly, “I don’t want water!!!” (I swear fire came out of my mouth when I said that, lol). Then I cried. A lot. A LOT. It was in that moment that D and I realized three things: 1) Steroids are the devil, 2) Do NOT offer me water when I’m upset and 3) Holding in my tears was not the answer. The build-up caused me to breakdown and we both felt it.

ICYMI: Part 1–The Shock of Being Diagnosed with MS

I went back to see my neurologist after I finished the steroids and he told me the FDA recently approved an oral treatment for MS. “Do you want to try it?” HELL YES! I was so tired of catching the “flu” once a week that I was willing to try A-N-Y-T-H-I-N-G! Even after I popped the first pill, I still didn’t believe this was my new reality. Meds for the rest of my life? Could you imagine being a young 20-something finding out you have a disease that is considered a disability, that has no cure and requires you to be on medication that doesn’t prevent it, but delays its progress? A sick joke. I also found out that annual MRIs and getting lab work done twice a year was my new normal. Which, in my mind at the time, came with so many other implications and questions.

  • Does this mean my kids are at risk of getting it? Oh, wait, can I even have kids with MS?
  • What happens if I don’t have good health insurance?
  • Am I supposed to go join one of those weird support groups now?
  • How much time do I have until I…lose to this disease?
At my first big girl job, cutting up at the company holiday party

My mind was chaotic and my doubt was firm. But, once again, I tuned out the noise and popped the pills, bellowing a deep sigh every time. I recall there being days when I would cry to D and tell him that he deserved better. In my eyes, he was amazing, intelligent, strong, handsome (SO handsome!) and, most importantly, healthy. To me, he deserved a woman that was equally yoked. I matched him in every area except health and it hurt me. I would cry on his shoulder sometimes, convincing him that a million women would love to have a man like him and that I loved him so much that I didn’t want to subject him to this “thing” my doctors claimed I had. He would repeatedly reassure me that there was nowhere else he wanted to be. That even if I had MS, it didn’t actually have me.

As months went by, I noticed that my tear-filled moments became more sporadic and shorter. I also found myself doing more research about MS–diets, meds, lifestyle habits, natural remedies, different stages of it. I read more in that short time than I had since hearing my diagnosis in 2012 prior. Who am I?? I could sense myself tip toeing to acceptance, preparing to announce to the world who I was without stumbling through my declaration. I’m a 20-something year-old black woman from Philly with a lot of grit and ambition who has…Multiple Sclerosis. 

The sick joke might be over–it might be time to stop denying my MS diagnosis.