When I was diagnosed with MS, I struggled a lot with my identity and sense of self. When you go to the doctor and they tell you that you have strep throat, you’re given some antibiotics and a timeline for when things should go back to normal. There’s no change of identity and no questioning what your life could look like because of all of the uncertainty and long term effects of having suffered strep throat. You get sick and eventually you get better. When we are told that we have a debilitating disease, one that is lifelong, for which there is no cure, and it is also progressive, it’s nearly impossible not to struggle with having to exist in what feels like an alternate reality. It feels like you’ve been sentenced to life in prison without a fair trial. You feel violated, misunderstood, helpless, angry and full of despair.
You can no longer picture growing old with your significant other and yelling at kids to stop running on your law without also picturing the other version of the scenario where you are wheelchair bound, bedridden, or you’re unable to care for yourself. Suddenly, what was a fantasy about a peaceful retirement and an easy afternoon is now shrouded in the uncertainty of what capacity you will have to enjoy the simple things we all expect to look forward to. If this sounds melodramatic to you, I’d be willing to bet that you either don’t have an autoimmune disease, or you’re sitting on a book entitled “How to Be Perfectly Well Adjusted to All Things in Life” and refuse to share your copy with any of us.
Living with an incurable, progressive illness feels like you’re stuck in a pitch dark room with something that intends to hurt you. You have no idea when or where it will strike, and it’s wearing night vision goggles. It’s no wonder so many of us live in our anger stages for so long. It’s not a fair fight. It becomes hard to picture the front porch or the green grass at all. It takes a lot of time, patience and acceptance to get to a place where you can begin to imagine multiple realities being true at once, much less cope with those realities.
While we are constantly terrified of the worst happening, it can be too easy to forget that we are still in the running for our best lives, even if our chances are fewer than the “healthy” person next to us. The epiphany I had about this is that my “best life” will always include some level of my Multiple Sclerosis. Until there is a cure, that is the one thing I can actually be certain about. Oddly enough, because I was able to identify that for myself, it felt like I was able to start reforming my ideas of what I was capable of and what I should do to be ready for the life I want to be able to live.
I used to feel shame about letting my mind wander into dangerous territory when it came to dreading the unknown of my disease. I thought that it wouldn’t help me at all to dwell on things that couldn’t be changed, predicted, or planned with any real accuracy. I still feel like it isn’t the most helpful thing that I could do, certainly not the most productive. However, I have come to realize that allowing myself to reevaluate my life and explore who I am beyond the things I used to use to define me (work, work, and work), has afforded me a deeper understanding of the things that are truly important to me on a personal level. Those are the things I want to define me. Those are the things that should be prioritized.
Having to question my identity when I was diagnosed was the first time since I’d left college that I really had to ask myself what I was doing with my life and if I was headed in the direction I wanted to go. At that time, I didn’t have time for hobbies, I had almost no social life, and my overall stress levels were probably largely to blame for why I ended up being diagnosed when I was. I was physically in shambles and this whole identity of the “healthy, working, pre-diagnosis” life was just as much of an uncertain illusion as a life where I am riddled with MS. It was just the one I had already grown accustomed to, so it felt less dangerous to me.
I’ve talked to many people who have been faced with those same identity struggles and who have grieved the loss of their “healthy” selves. They too can admit now that they’re more mindful than they ever were before about their wellness before. I understand that a lot of that feeling of being lost comes naturally because we want to mourn the loss of what we viewed as our “normal” life. It wasn’t so much the jobs or the titles we held as it was the idea that we pictured ourselves as those things and in that picture, we were subconsciously also picturing ourselves as optimally functioning and healthy. Our brains just automatically filled in those gaps for us.
When I was really sick, mid relapse and had taken a leave of absence from work after my diagnosis, I was terrified of losing everything I’d worked for since graduating college. I’d worked for two big firms, and had finally gotten to the place where I could see myself settled and working for the rest of my career. Stepping back from work in the capacity I’d become accustomed to felt like I was betraying myself, the countless investments I’d made in my education and my career, and all of the sacrifices I’d made to be where I was. There was also the level of prestige that my career carried. I would be lying if I didn’t say that the thought of walking away from something that I felt gave me credibility and impressed people was personally devastating. Growing up as the youngest of 5 kids for most of my childhood, I grew up with a complex about being the “dumb” one, or the baby of the family. I always wanted to be in a position where I’d be an authority on something very important. I viewed having MS and telling my family about it as being that little girl again, the one who couldn’t make it on her own or take care of herself.
Obviously, I know now that some of the toughest and most self-sufficient people on earth are the ones who can move through life carrying the extra weight of an autoimmune disease and its symptoms. That was something I could only learn by experiencing it for myself. Ironically, I’ve never cared less than I do now if others think I am weak or if I need help. Those things are all relative. Even though it was extremely difficult to come to terms with, I have to say that I am beyond thankful for the lessons I continue to learn from this disease. I feel my sense of identity and purpose is so much stronger than it ever was before because I live so much more for myself, rather than based on how I want to be perceived. I care so much less about proving myself to anyone because I have already proved more than enough to myself. I know I am strong. I know it is often harder to ask for help than to suffer in silence. I know I am capable of taking on really difficult things, speaking up for myself and I know how to let things go when it’s time to do so.
While MS didn’t directly make me healthier, having MS was absolutely the catalyst to my taking action and caring more about my body and what I use to fuel it. I always say that I couldn’t be certain I would have ever arrived to where I am physically and mentally if not for MS and because of that, I am grateful. Finding ways to appreciate our responses to the hard things in life is my secret weapon when it comes to having to face them. It is a challenge, and a way that I can take control of the little part of this experience that I can.
If you asked me who I was before knowing that I had MS, I most likely would have told you that I am a Financial Advisor at a top firm on Wall Street. I really loved saying that because I thought it sounded so important. I feel sad now when looking back at the woman who thought that was the most impressive thing about her. It actually shocks me that I genuinely thought that was the most important and noteworthy thing about myself. What my MS has taught me is that I am Suni Conway, first. When people ask me what I do now, my answer feels so much more me.
I pride myself on being present. I am passionate about writing. I read… a lot. I make the time to learn as much as I can about space because it fascinates me. I speak multiple languages. I work out in as many different ways as I can think of. I am an adoring wife, a loving daughter, dependable sister and a loyal friend. I also run a nonprofit to help people who are going through the many stages of becoming diagnosed with an autoimmune disease. I am also still a Financial Advisor.
MS created a sense of urgency to get to know myself and be as true to that as I possibly could. So while yes, my life looks entirely different than it did before I was diagnosed, and I absolutely struggled with my sense of identity, I think I am more me than I ever was before. I don’t think I realized how much I had been neglecting my own identity because I didn’t know it well enough to realize how much more to me there was than the field of work I chose to go into. I think it is absolutely great to really love and be proud of what you do to earn a living, but when it comes to defining our identity, I’m so glad that I am able to look so much further inward to see all of the other attributes that contribute to who I am rather than just a couple external factors. The most helpful things to remember for me were that more than one thing can be true at a time, trying something new doesn’t mean that you’re giving up on something you already do, our priorities continue to shift the longer we live, and anything that puts you outside of your comfort zone is something that was meant to teach you more about yourself than you may have ever imagined.
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