I have always said that I look at living with my Autoimmune Disease the same way one might look at being in a lifelong committed relationship. It takes so much patience, flexibility, compromise, understanding and above all, continued personal growth. I used to joke around that I was in an arranged marriage with my MS because it was this lifelong commitment that I felt I’d been forced into. I didn’t find my new lifelong partner to be attractive, open to communication, or even humane. Little by little I would lose bits and pieces of myself because I felt that if I did anything but walk on egg shells, I’d upset the delicate balance of what was actually no balance at all. I was purely living in fear of what might happen if I ever went against the wishes of my new life partner. I realized that I had to pull a full on Bell and find the softer side of this Beast, because if I didn’t, I was destined for a lifetime of living with a monster that I didn’t know. Maybe there was a soft side of my MS. Maybe I could learn to look a little deeper and see the potential of some grace or kindness – I just needed to understand how my MS moved through its own emotions. Its symptoms may roar loudly and strike fear in me, but it too has vulnerabilities and at its core, it doesn’t mean to be bad. I’ll leave the analogy there, as I feel it is pretty self-explanatory. My MS is not something I ever want to hate. We are stuck together and I want to see that what I believe to be true about everything else in life is true here too; you can find beauty in almost everything.
I committed to getting to know about my own version of this disease because I wanted to know how best to learn to live with it. Over time, I would gently press against the walls of the confines of my symptoms, I’d see if maybe I could steal and inch, a foot, maybe even a mile of wiggle room. I learned what it meant to pivot, how I needed to adjust my expectations and reframe for myself what it meant to move forward. Whether the road to progress is forward, backwards, sideways or upside down, I came to understand that as long as there was movement in any direction, I would work with it.
One of the most important lessons I want to share with anyone reading this is that which I learned when it came to allowing myself to express and purge negative emotions. We constantly worry about our stress levels, what could be triggered by lengthy periods of sadness, turbulence, or grief. Maybe we are immersed in a bout of fear when it comes to what the future might hold; this one is very common for me. I used to be afraid of letting my mind reach the depths of despair. I was always told that it isn’t helpful to think of all of the negative outcomes or to fantasize about worst case scenarios. I understand the logic behind that way of thinking, but I also know that when it comes to my disease, my feelings about it, the way that I worry and feel fear isn’t always logical- in fact it almost never is. It can’t possibly be, because as it stands, no one really has the answers to what will become of this for me.
Coping with that, and learning how I can best process the feelings moving through me, has been one of those events where it makes sense to go backwards before you can move forward. Holding in negative emotions and trying not to get too upset when you’re feeling overwhelmed or fearful has its appeal. You save face, maybe you’re not as exhausted from a full on meltdown, whatever the benefits you can imagine from not entirely losing your shit are for you, I’ve learned that over time, it’s more painful for me to hold those thoughts and emotions in. When I do this, they last longer. It’s this slow, simmering torture, this feeling of impending doom. It is being in the moment with loved ones laughing and sharing and knowing in the back of your mind that a part of you is held back from really being there because that part of you in that moment is still grappling with this very dark and cloudy feeling. There’s never a day where your sky doesn’t have a raincloud in it.
When I feel overwhelmed with emotion or I am experiencing dread or fear due to present symptoms I am having, I allow myself to lose my shit for a little bit. Last weekend, that meant full on crying in a public gym when my left leg was identifying as a jackhammer while the rest of me was still identifying as Suni. Sure, it would have been infinitely less embarrassing to not break down in the corner of the gym crying and letting out my frustrations, but the result was that I got to purge those feelings. You can only cry in public for so long before you start to feel like laughing at yourself. It can’t possibly go on forever, at least not in my experience. When I was finished, I picked myself up, acknowledged that I actually looked kind of cute and childlike in the mirror with a red, puffy, salty face and then, with the support and encouragement of my awesome husband, defied my own expectations of myself and lifted a heavier weight than I ever had before. I’d cleared the rain cloud for myself and as far as the rest of that day went, there was nothing but sunshine for me.
All of this is to say that I have learned so much about how I need to exist in my relationship with my MS. If it throws a temper tantrum in the gym, maybe I need to be louder than it instead of cowering away and worrying so much that I might interrupt it’s plans. I have learned that my needs, physically and emotionally, are something I refuse to prioritize last and that if we are in a disagreement, we both should be allowed speak our peace. For me, speaking my peace meant sitting on the floor in tears until I no longer felt the need to do so. Like so many other relationships or situations in life, you’re not ready to move on from an argument until you are ready and the quickest way for me to move on from an argument is to feel heard.
For too long, I was scared to be louder than my MS symptoms. I thought their voice mattered more than my own, that it was some kind of warning or foreshadowing of what is to come. Sometimes our symptoms are just that… symptoms… feelings… my disease’s emotions. Sometimes they’re just passing through and sometimes we need to go to therapy and find out what is at the root of them. Instead of living in fear that every single feeling that passes through me is the end of the road, I just let myself feel it until I don’t need to anymore. It really is that simple and life feels so much lighter this way. Choosing to live in optimism isn’t being optimistic about everything, nor is it waking up each day with blind optimism, it’s a constant renewal of vows to my partner, my MS, that good, bad and ugly, we will find a way to move forward. Even if the first step is just picking myself up off of a tear soaked gym mat, we will move forward together because we can’t do it alone.