Making My Mark with MS

Today is March 1st. The beginning of MS Awareness month. In light of this, I have decided to open up and share my story. To share my truth and my journey to diagnosis. The internet has a funny way of connecting people who would have never met IRL. Sometimes those people can have the biggest impact on your life. Hopefully this post will connect me with someone that I am able to help. My goal is to help them as others have helped me.

As I mentioned in my previous post, 2017 was a really hard year for me. I moved back home to New York, I experienced the death of one of my closest friends and I was diagnosed with Multiple Sclerosis (MS).

MS is an autoimmune disease which eats away at the protective covering of nerves. It is unpredictable. Unfortunately, there is no cure and the cause is still unknown. Women are two or three times more likely to be diagnosed and more than 2.3 million people worldwide are living with this disease. For such a big number it can feel so small in the grand scheme of things.

Spring 2017 I woke up one day and my vision was blurry. I had to look to my far left and right to see what was right in front of me. My vision was compromised but I thought it was just a next level migraine. I’ve always gotten migraines so I didn’t think anything of it. I went to see my internist for a casual check-up and he recommended I go see a neurologist. He explained to me that what I was experiencing could be symptoms of MS. I went straight to Google and found myself terrified (note to self and others: never result to Google for medical answers). I immediately began to freak out. I started to think that I was dealing with something close to death.

I still remember the day that I was diagnosed. Transitioning from spring to summer I got a few MRI scans and was ready to get a medical opinion. As I walked into the neurologist’s office with my parents the whole time I was just thinking, “Please God, let this not be real.” The doctor walked me through a physical test and reassured me that everything seemed okay. I handed over my MRI scans and felt so thankful to hear those words. Fast forward 24 hours later, my mother calls me with news that I would never be able to process. The doctor took a look at the MRI scans and was positive that I had MS. There were some routine processes that needed to be done but it was advised that I start medical treatment right away.

As someone who has been in and out of hospitals and doctor offices since I was a little girl I take medical practices very serious. In the moment, I think I was more taken aback that a doctor practicing for longer than I have been on Earth was confident enough to give me false hope; than I was about the actual diagnosis. The doctor felt so reassured because I was able to follow a light with my eyes and walk back and forth with one foot in front of the other. This was the first time I felt vulnerable in the situation. I didn't like the fact that I had put my hope into someone else's hands.

A few days later my fear turned into panic. I was angry that this doctor wasn’t able to look beyond my outer appearance and see how terrified I was. I was upset that he didn’t take me more serious as a patient. He had no right to give me false hope and take it back. My panic turned into anger. The anger is something that I’m still working through. The few people that I have shared this diagnosis with have asked, “Are you angry?” To be honest, I’m fucking pissed.

2017 was one of the hardest years for me and this was just something to add to the stack. Life is hard to balance when you constantly have your health on the back of your mind. MS has been haunting me from the moment I heard in spring of 2017. The constant thought has turned into denial. As I find myself still processing, a lot of it has been easy for me to ignore. I’ve ignored that I am still the same person but I have also changed. And that is okay. This disease doesn’t change who Itopia is but it has changed the way that I carry myself. It's changed the way that I look at life. Even the way that I look at myself. When I first got diagnosed I found myself thinking back and wondering if this was something that I did to myself. If it was somewhere that I went that exposed me to this. The constant question in my mind was: "Was this all my fault?" I found myself retreating more to myself and being less social. I began to form a scarlet letter on my own chest. It was as if I had guilted myself into something that was far from my reality. Looking back at it now, it seems silly to think that I could bring a non-hereditary disease with no direct cause onto myself. I guess that was my way of accepting this reality.

Another part of accepting my reality was allowing myself to process. I was so focused on being good for everyone else that I didn't check in with myself. I found myself wanting to share with some family and friends but holding back out of the fear of being a burden. I joined a support group on Facebook (Shoutout to @weareillmatic) where I am surrounded by all of these powerful strong black women who are all going through the same thing. If these past few months have shown me anything, it’s reminded me that black women are badass! But you already knew that. Here you have this group of 200+ women going through different stages of this disease yet we all find a way to uplift and motivate each other.

I still have my days. The days when all I do is sulk in the bed watching Netflix holding back tears. The days when all I want to do is distract myself from reality. But, I am trying to steer away from that. Most days people ask me how I’m doing or feeling and I say, “I’m fine!” as I cringe to smile. Now, I am beginning to believe that. Despite the pain and exhaustion every now and then, I am doing fine. I'm doing better than most. I am learning to still live my life. A diagnosis is just a recognition of an illness. It does not make me who I am.

This disease is something that I hope to bring awareness to. In the black community we tend to shy away from taking our health serious or paying attention to our bodies. With relapses dating back to December 2016 I didn’t know what was going on with my body so I just ignored it. Looking back I do not regret but I wish I had been more attentive. Our bodies are our temples. We have to treat them as such. Thank you for reading. Thank you for giving me a safe space to share my truth.

Please feel free to write, text, comment or DM me if you have been diagnosed and are looking for a listening ear. Advice and words of wisdom from fellow women is what has kept me pushing so I would love to give that back to others.