5 years ago on this date, I was scheduled for an appointment to go over my MRI images with neurologist I had only met once before. Before getting there, I remember thinking “they’re not going to find anything and the way I’m feeling will remain a mystery until I unexpectedly die”. That thought, actually crossed my mind and I didn’t think any “bad news” was going to come from this visit, because wouldn’t they have told me to bring a loved one with me? (I was only 20 years old). I remember every little detail, down to which parking spot I parked in, the weather, and what I was wearing. I guess when it’s one of the most devastating days of your life, your brain captures as much as possible.
As I walked into the building, got into the elevator, pressed the button and made my way to his office, I felt cold because the AC was turned up too high. I was slightly nervous (I think I suffer from white-coat syndrome) but not anymore than I usually am. Nothing in life ever prepares you to be diagnosed with an autoimmune disease, especially at the age of 20. When my name was called to go to his office, so I jumped right up and walked in there. The doctor shook my hand like it was our first time meeting, like he hadn’t remembered doing all those odd tests in his exam room that made absolutely no sense to me. He then pulled up the images of my brain, (I was kind of giddy about because I never saw an imagine of my brain before) and said, “can you see that there”? It looked like a “normal” brain to my knowledge, but I did notice what he was trying to point out. It looked like fading, blurry parts of the image. As I sat back in my seat, I asked “what is it?” The doctor replied, “You’re showing early signs of Multiple Sclerosis”. I instantly started crying, even before he finished his sentence. I remember feeling confused, overwhelmed, and thinking am I going to die? From there it was awkward silence, and I muttered “how did I get this”? The cold neurologist replied, “we don’t know”. I barely knew anything about MS, other than I was just diagnosed and as I’m sobbing, thinking could you be any more vague [eyes-roll]? ‘We don’t know’ as you don’t know, or neurologists in general, don’t know? While he explained further about MS, he also threw out what I like to refer to as an “old-school opinion” that I should/can not have children of my own. Not knowing what I know now about MS and pregnancy, I was sick about not being able to carry my own children. Also, not realizing how “old-school practices” works, he also proceeded to say that there is no cure (truth), but that I would ‘most likely’ end up in a wheelchair. That’s when I walked out. Everything broke me. Back to the elevator I went, sobbing and face completely red. I called my mom to share everything with her, and was trying to be quiet because I sound like a maniac when trying to talk while crying but she couldn’t hear me mutter the words, “I have MS”… so I screamed it. She started to cry, and was worried about my condition to drive home. She asked that I call my boyfriend (who is now my fiance) before driving home. She also suggested we get a second opinion. While I appreciated her enthusiasm, all I wanted was to forget I had gotten bad news. Put my brave face on and act like nothing was wrong. But first, I did call my boyfriend and tell him. He was extremely supportive saying, “we’ll get through this together”. But it was already decided in my mind, get through what? And that’s exactly what I did. I dealt with the symptoms on my own, not sharing too much about how/what I was feeling. I stayed quiet for the whole first year of having MS. I didn’t tell people, I pretended it didn’t exist, hoping it’ll just go away if I pretend I don’t have it. Nope, wrong.
When I finally found a neurologist I understood, he ordered another MRI. This MRI then showed progression, which is when I realized how serious this may become. It broke my heart to admit, I’m different from everyone else. That I would now have this ‘diagnosis’ labeled on me. After 5 years with this label, I’ve realized that the hardest part is having to “prove” how sick I am despite looking fine on the outside. Or the assumption that making people aware of MS is used for attention. I don’t want your attention. I want your respect for carrying on my day, despite my battle with fatigue, pain and my concerns about where this disease will take me.
Every day is a battle. Some days, MS puts up a good fight, but I am much stronger – especially after 5 years. Happy MS Anniversary to me. I am Made Strong.