Chronic Illness and Learning What Being a Warrior Means to Me
by Christy Batta
Here’s how my story begins: In February 2011, I received a multiple sclerosis diagnosis after experiencing a tingling sensation that spread all over my body.
I learned that MS is an autoimmune disease that causes your immune cells to attack the myelin coating around your nerves which makes the nerve signals behave like they are moving through frayed wire: the quality of communication is not always consistent.
This causes every type of symptom you can imagine from mobility issues to cognitive difficulties. At the time, I was finishing my last year of graduate school and was faced with a crazy terrible time of trying to figure out what my future looked like in terms of my career as well as my health.
Over the 7+ years since then, I’ve been fortunate to have a really positive experience with disease-modifying therapies, alternative medicine, and wonderful doctors helping me stay well. And since I can pass as a “regular” non-sick person–meaning my disabilities remain invisible–I decided that it’s important to make my diagnosis public so I can help educate people about the disease as well as challenge stereotypes about what sick people are capable of.
However, somewhere along the way, I think I got used to the idea of being a hero for MS. That my wins help people see that folks with MS are still valuable. It is a story and impact that I am proud to be a part of, but what does that mean about the times I’m not winning? How do I practice “self care” and healing when I have such high expectations for my wellness and what it means to others? In my journey right now, the obstacle I’m faced with most often is overcoming my wish to be a warrior that “wins” at having an illness. The high expectations I have set for myself are driven by this desire to come out of each battle on top and with a lesson to share with the world that gives meaning to my struggle. But the reality of living with MS is messy. There is a lot of uncertainty and lack of narrative as well as–let’s face it–a many number of moments of feeling sorry for myself.
In experiencing these periods when fear is coming out on top, I’ve learned the best way I can be a warrior is to share my struggles instead of holding them in while I wait for the closure to this part to come. Even though I feel a drive to have a story to share that includes a neat beginning, middle, and end, that just isn’t the case when you have chronic illness for life. Every day is a new beginning. Sometimes every moment. Sometimes the story is circular where I feel like I ended up back where I started. It’s a hard thing to constantly fit into a “winning” perspective.
That said, there are some things that have helped me figure out how I share my story and work on making friends with being a chronic illness warrior that doesn’t win all the time. It is in these tools that I can more clearly see progress I’ve made. Reflecting on them is a tangible way to measure that I am a more battle tested warrior compared to the previous version of myself. I don’t want to get too preachy but I’d love to share these in case any of them resonate with you!
Identifying My Heroes
I’ve found it really powerful to follow people out in the world who are speaking in a way that resonates with me. I can tell you that not everyone with the same struggle as you is going to handle it in the same way as you, or even in a way that makes sense to you. If someone’s sunshiny-positive spins make you feel like crap, you don’t have to engage with that! One of my favorite voices right now is comedian Chris Gethard. He takes the exact opposite approach to an “always winning” mentality. He speaks frankly about his experience with mental illness in his comedy and on his podcast, called Beautiful/Anonymous, where people get to talk to him about anything they want, which means a lot of sharing about their unique pains and struggles. I love how people get real and raw with him on this show. It helps people see how important it is that we figure out how to do that more with the people in our day-to-day lives.
Sharing in Safe Spaces Online
I have learned along the way that when I’m really run ragged it can be hard to talk about what’s going on with people in person. I just anticipate when I think things will get awkward or weird in the conversation and try to plan out what I’ll say in a way to avoid that. It’s exhausting! But when I post online–usually to my Instagram–I’m able to craft what I really want to say and not worry so much about seeing how people react when they read it. Last year I even experimented with a 100 day lettering challenge about my health stuffs that took place mostly in my Instagram stories. I learned I could get more honest and sincere knowing the post would disappear in 24 hours. It was a really positive experience and I got a lot of wonderful feedback and encouragement from friends who were glad that I shared so they could know more about what living with MS is really like (even the messy parts!) as well as people also struggling with chronic illness who connected with what I was opening up about.
Assembling my IRL Team
Even though posting online has some real benefits for me, I still find I need in person connections, too. Because it causes me so much worry to think about how what I have to say is going to go over with whoever I’m talking to, I have identified a small group of people that I know I can say anything to and it will be fine. These are the people I reach out to when I need some real talk or to have someone say, “I know exactly what you mean.” This team doesn’t have to be extensive: 2 or 3 people that help you feel like what you’re feeling makes sense can make all the difference during a rough week (or month, or year).
Finding Your Own Way
I didn’t originally intend for this post to be about giving advice, but I think that these tools that I have gotten acquainted with over the years could be an interesting jumping in point for someone who is on their own journey of being vulnerable and making friends with the raw parts of their experience. And if not, totally disregard and look for your own tools. I’ve definitely spent way too much time stressing about whether I am being a sick person in the “right way” because of getting caught up in other people’s advice that doesn’t quite work for me. I’ve spent time and energy stressing, worrying, and self-judging that I wish I could get back. I’m finding my way through combatting this aspect of chronic illness and wish the same for others struggling with the same.
I am very happy to have had the opportunity to share what has helped me make sense of my struggles. There is value and strength found in forging your own way as a warrior and I hope that you have found something of value to use in your own journey.
Christy is an award-winning graphic designer for nonprofits and businesses doing good work for others. Her mission is to help clients make the right impressions on the right people. In addition to her design business, she is the co-founder of the Unofficial Hand Lettering Society of Silver Spring. You can learn more about her design work at heybattabatta.com.