For years I had seen things in passing here and there about MS but I had never taken the time to research and educate myself about it. Truthfully, I think it’s because I didn’t feel like it applied to me. When I was diagnosed with MS in December of 2018 at the age of 27, like many others who’d heard that same life sentence before me, all I could think about was how I wasn’t ready to be confined to a wheelchair. I wasn’t done exploring the world or building my career as a financial advisor at one of the top firms on Wall Street. I wasn’t finished being a healthy wife for my husband of just 10 months. I simply wasn’t ready for everything to change, but at that point, it was safe to say that not only did MS apply to me, but it's dad called the head of admissions and got it in with a full ride scholarship.
My doctors believe I had been fighting Multiple Sclerosis for seven years before being diagnosed. In that time, I had been hospitalized for losing my vision, severe Vertigo, Spinal Arthritis, and the list goes on and on. I was no stranger to hearing that the tests run on me were inconclusive, that stress or depression was probably at the root of my physical symptoms and that what I was experiencing was “normal." The first time I had ever even heard of MS was when I was told that I didn’t have it back in 2012 while in the hospital for Optic Neuritis (a very common first symptom of MS). My spinal fluid didn't show signs of lesions or abnormalities when they pulled it from my body, so there wasn't much they could do for me. There wasn’t a definitive way to test for early stages of MS so the strategy had to default to ruling out everything else in the world it could be. In that time, finding someone who was willing to sign their name on a diagnosis for a disease that was still a complete mystery to the medical world was next to impossible. As an aside, I would just like to say to anyone else who has ever had a spinal tap, you have my utmost respect. There is a reason there’s a hardcore rock band named after that procedure. I still shudder to think about the size of the needle they drove into my back, and the weeks of crippling headaches that followed it.
I had been doubted, written off, misdiagnosed and judged more times than I could count and I started to lose trust in medical professionals all together. I remember walking into appointments and feeling so insecure about sharing my symptoms, thinking that if they seemed milder that day I wouldn't be taken seriously. Before a word was even spoken, I felt like I had to defend myself. I constantly felt like the truth just wasn't enough. I knew something was wrong with me and I would go to my former primary care physician complaining of fatigue, fogginess, dizziness, and intense numbness. There were months when I couldn’t feel my body from the torso down and weeks when my feet felt like lead blocks. Waves of crippling pins and needles would take over one side of my body and I would have to pull my car over to the side of the road or lean against a wall outside of a restaurant and just wait for it to pass. It didn't matter where I was, everything just stopped working.
My well intentioned friends and family would try and reassure me that it was probably a pulled muscle or pinched nerve and that they'd experienced similar symptoms before. The part of me that didn’t want to be different and tried not to always think the worst was quick to tell myself that they were right, it wasn't a big deal and it would resolve itself in time. I had resigned myself to the thought that what I was going through had to be normal but I couldn't help that idea that would creep into my thoughts when I would let my guard down. I knew there was just no way it could be that simple. After all, every time I searched my symptoms online, MS always came up on the list even though it was classified as very rare. I would always tell myself that it just couldn't be MS... I had never known anyone with MS. I would remind myself that this is why they tell you not to search your symptoms online and that it was just there to scare me into making yet another useless appointment.
Over the course of several years I was told I had ADD, Anxiety, Peripheral Neuropathy (nerve damage), I was told to lose weight, that my breasts were too big for my body and my spine was being crushed because of it. I was told that I needed to stop wearing high heels to work because I was causing permanent damage to the ligaments in my feet. So, off I went with my many prescriptions and to have a breast reduction at the direction of my doctor. The numbness never went away. There I was, 3 cup sizes smaller, more in shape than I’d been in years, confused, defeated and all the while, battling the ever present symptoms of a disease that was seemingly invisible.
As it turns out, I have 4 lesions in my brain and 3 in my spine that make life more difficult for me. I know that you may be inclined to wonder if the moment I finally received my diagnosis was healing for me, or if on some level I felt better knowing that my gut was right all along and I finally had the answer I had been searching for. The answer is no. I felt worse than ever. I felt angry and violated. I wanted to beat down the door of every doctor that ever made me feel dramatic or crazy and shove my scans in their faces. I immediately went home and researched malpractice lawyers and became completely consumed with plotting my revenge against the woman who was responsible for the 14 thousand dollar breast surgery I underwent. I was doing anything I could to focus my attention away from the fact that I had just been handed a life sentence.
Looking back on those first few days after hearing what I already knew to be true for at least several months leading up to it, I was just going through the motions of what I thought I was "supposed" to do. Fight. I wanted to fight something. I was so angry at the injustice of it all. I was looking for someone to blame so that I could prolong the inevitable task of having to address my diagnosis and deciding how I was going to confront it. We always hear people say things like: "She is BATTLING breast cancer, He's an MS WARRIOR, or Keep FIGHTING the good FIGHT." To me, it seemed like all rhetoric pointed to a bloody battle where only one could come out victorious. Kill or be killed. I had a lot to learn and it took me several months to realize that fighting a disease for which there is no cure would kill me quicker than my own immune system sassily attacking itself ever would. What it ultimately came down to was this: I had to make a conscious decision to refuse to “fight” this disease because I didn’t believe that fighting something every single day for the rest of my life would make me happy or healthy. Because of this, I also worked on letting go of my anger towards the doctors that I felt had wronged me. That wasn't, still isn't, and probably wont ever be easy.
After being diagnosed, I reached out to every support group that I could find. I googled "celebrities with MS" and "people in history with MS" because I desperately needed to feel like I could associate myself with someone familiar going through the same thing. Not that it makes a whole lot of sense, but I felt that something about knowing a famous celebrity having MS would have comforted me. I didn't want to be alone in this and as much as my family and friends were providing me with their endless love and support, no one could really understand the level of isolation I felt when my disease activity was always with me and no one else could feel or see it. MS, and specifically the brain fog that I get, has a way of removing you from everything around you and that disconnection can feel so lonely. I called the National Multiple Sclerosis Society and discovered a thing called the MS Friends Help Line. I spent hours talking to different strangers, all with varying degrees of their disabilities. While I will forever be grateful to those several women for being so supportive of me and doing their best to give me a realistic point of view on living with MS, year in to diagnosis Suni would have told newly diagnosed Suni to pump the breaks because I would soon learn that no two MS cases are alike and there is no roadmap for the progression of my disease.
MS is unpredictable and talking to people who all had their own versions of it, while at first could seem comforting, ended up doing more harm than good. I remember thinking that my days were numbered and that I had to take time to feel the wind on my face. I had to embrace my husband’s annoying habits like constantly making abrupt loud noises and leaving a string cheese wrapper on the kitchen counter any time he entered our home. I thought that everything had to change and we had to immediately move to a home with no stairs because soon, I wouldn't be able to climb them. There are days when I wake up and my legs are numb and I can’t help but wonder if that’s the first day that I will no longer be able to walk unassisted. The truth is, that could happen, but it hasn’t yet and it’s hopefully not going to for a while. So, I had to figure out a way for me to focus on my own MS and to take it at face value rather than trying to read someone else's roadmap.
I’ve learned that I can make feeling like a diseased person an errand for myself to run. I essentially get to give a nod to what’s happening and then check the item off the list and say to myself, "I’ve acknowledged that my entire face is numb today and it’s hard to concentrate on swallowing food. Next. I am acknowledging that we are out of half and half.” I find that when I just try and move past my symptoms without giving them the recognition they demand, they feel painfully unaddressed and ultimately everything builds up. There was a time when I decided I would try and go a week without complaining of my symptoms to my husband because every part of me could feel it weighing on him and that broke my heart. I knew how hard it was to have me talk about my symptoms constantly but have no answer for what he could do to help. That is just the reality that we had to face as a couple. My legs felt like Jell-O, I would fall, I'd have numbness everywhere, my brain was so foggy I couldn't think straight, my skin hurt so much from the steroid treatments I was having that even my softest, baggiest sweater hurt to wear. I would try to talk to him and wouldn't realize that I'd start speaking in broken sentences because I was so exhausted, I was unaware I hadn't said the first half of my thought aloud. He felt so helpless and I felt tremendously guilty and responsible for that. All I did was complain because I didn't know what else I could do and part of me felt like I'd held my symptoms in for so long that I wasn't going to do that to myself ever again. I quickly realized that I couldn't go back to that.
Holding things in breeds resentment and insecurity- two things that don't make a marriage easier. When you don't share whats going on with you, or you withhold information from people, you have a tendency to start feeling pissed off when they go on about their business as usual. You can't help but be upset when you feel like people just don't understand you or they're not giving you what you need. That's why I came up with my MS errand. Every morning, I list off my symptoms and if there's anything that I think can be done to make my day easier. It helps my husband because he knows where I am mentally and physically for the day and it helps me because I don't feel like I am having to hide what I am feeling or deal with my symptoms alone, but I also gain back so much more time in my day that can be filled with other things, like living. It's freeing for both of us.
Don't get me wrong, I don’t get to turn it off. It is always with me. Symptoms come and go in a rude, unpredictable, random sequence and when you’re having an attack it can be absolutely horrifying. I think about my MS every single day and I don’t pretend that I don’t have it. What I want to emphasize is that I actively make the decision not to dedicate my days to my MS even when that day is super fucking MS-y. I simply refuse to wake up one day 50 years down the line and only have my disease to show for it.
While I think there is no shortage of admirable work to be done in support of foundations and organizations working to find a cure and to raise awareness, I’m still not sure of what my role in all of this is meant to be. I just know that I want to help. I want to be a name that comes up for young people googling MS and hopefully, they can see themselves in me and find that comfort that I was searching for when all of this was still so new to me. Most importantly, I want to advocate for how important it has been to set clear boundaries on the parts of my life that my MS has access to and to encourage people to explore doing the same for themselves. Boundaries are fantastic. I want to scream that from the mountain tops so that everyone can hear me. MS wants to snoop in your bedroom when it comes over for dinner, it wants to know where you got your duvet cover so that it can look up how much it costs and judge you for it. I wholeheartedly think that this applies to all things in life- any disease, anything toxic in your life, anything that you feel is trying to hold you back. It’s solely up to you to decide how you will navigate the relationship you have with it, which will ultimately be your key to your individual roadmap and the control that you have behind the wheel.
I hope that through sharing my experiences, and writing about the things that I searched for when I needed help coping, I can help others like me, just trying to find balance, support, and familiarity while living with their own diagnoses.
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