It Couldn’t Be That Bad, Right? On Vulnerability, Invisible Turmoil, and Being a Voice for Others in the Face of Chronic Illness
I have to apologize, this article was meant to be released over six months ago, but with the way of things, and under no particular reason at all, here we are and here this is, quite late in its published date, but more relevant than ever.
Dani wrote a little something for us back in September of 2017, and since then she's had a number of articles published on her experience with Lyme, and what that has brought into her life while standing as an unparalleled support for those who find themselves in a similar place.
"You have to be strong to survive and endure your illnesses without forgetting who you are and what you can contribute to this world."
This is her story on facing vulnerability through the beginning stages of her diagnosis.
Vulnerability is hard; in speaking with others, in writing about our experiences, and even more so publishing those musings online for all to see and dissect.
During college, I relished connecting with others and exchanging stories. I was frequently inspired by others’ struggles, dreams, and ambitions. I loved sharing my history and seeing how such different backgrounds could overlap with common hurdles that had been overcome.
Until one spring during my senior year, something went wrong. Parts of me were changing and I didn’t know why. These changes were so profound that I didn’t trust my mind, my emotions, or myself anymore. The person I once was, slowly started slipping away.
When it came to my illness, openness was never easy for me. I somehow mastered the ability to communicate about my illness without having to express the gut-wrenching reality of it. Unintentionally, or possibly intentionally, I let others assume I had a manageable illness. I didn’t withdraw from physical therapy school, so it couldn’t be that bad, right?
Instead of reaching out for help, I maintained this facade that I was a little tired, but okay. I interacted with the Lyme community from the sidelines, allowing many of them to make the same assumptions as my classmates - I have a diagnosis, but I’m not as crippled by complex chronic illness as they are. I shared very little about my relatively silent battle on social media because I wanted my Instagram feed to reflect moments of happiness I could look back on during the bad days. It was easier this way (or so I thought).
However, there were times when I wanted, needed, to express to someone how the culmination of physical, emotional, and cognitive symptoms buried me so deeply it was as if my soul ached so badly it was being wrenched out of my body... but how? How can you put invisible turmoil into words?
This is where I failed. Someone who once freely communicated, retreated. The fear of being misunderstood, judged, or labeled as an exaggerator won over my desire to share my reality with others. It was during these times - and there were many - where I’d go two weeks barely speaking a word to my roommate, my best friend.
Two years. Two years I fought for my life, my health, and to survive a rigorous program at a top-ranked institution that perfectly healthy students struggle to finish. I forced myself to walk to class almost every day, attempting to maintain some sense of normalcy. I’d sit through lectures so fatigued I could barely hold up my head, so confused and spaced out I hardly remembered what we were supposed to learn that day, so nauseated I sometimes had to leave the room to make sure I wouldn’t vomit, and in so much pain it took everything I had in me just to make it through an entire class. As soon as it was over, I’d usually walk out not saying a word to anyone.
I often didn’t make it to all of my classes in a day because my brain and my body couldn’t take the abuse any longer. On the worst days, I’d try to walk back home from class hoping a little movement would mitigate some of my symptoms. On rare occasions it worked, but normally I’d end up disoriented, shaking, and nearly staggering down the sidewalk with tears welling up in my eyes from pure exhaustion.
I couldn’t be the student I used to be, nor the student I had wanted to be when I started PT school. I couldn’t take advantage of the research I had access to, because it was too hard to read. Instead of studying to learn everything I could, I studied the bare minimum I needed to pass my exams.
Time not spent in class, was spent at a doctor’s office or in bed. I was once the girl who spent hours studying and reading in coffee shops for the pure joy of it. Coffee shops were my safe place, where I enjoyed time with friends in my home away from home. This too was taken from me. I needed my heating pad to quell my back pain while I studied from bed. It was an accomplishment if I made it to my desk chair. Occasionally, I would go to those cafes I adored, but it was never without a price.
Who was this person I used to know so well? Where did she go?
I was lost. I felt weak and uninspired. I was so confused and overwhelmed by attempting to keep up with treatment and school, that I didn’t realize I was falling apart until I was already gone. Dreams of mine disappeared. Even if I fully healed, those dreams would require too much stress for me to achieve without risking another relapse.
All of my professors including the director of my program urged me to take a medical leave of absence.
So... the real question... WHY did I stay in school? Why put myself through this?
I persisted out of sheer desperation to earn a degree I had wanted since I was fifteen, out of pure fear that if I took a medical leave I would never come back to finish, out of outrage at our broken healthcare system which forces so many of us to fall through the cracks, and most of all because my grandfather, my biggest cheerleader, was ill and wanted nothing more than to see his grandchild earn her doctorate – the first in the family.
I clawed through my life for the past two years to earn a platform I could use for change. I saw an opportunity to make a real impact on people’s lives, and I refused to give that up.
Chronic illness has taken just about everything from me, but no matter what, I wouldn’t let it take this. My persistent determination drowned me so intensely at times, I couldn’t tell which way was up. The choices I made were the right ones for me, but they aren’t the right choices for many. For me, the outcome made everything worth it. People with invisible illnesses are invalidated and have to use the little fight they have in them just to be heard, and those are the lucky ones.
Complex chronic illness makes you become stronger than you ever thought possible, because there is no other choice. Every single day, minute even, you have to decide between letting your illness consume you, or fighting for any glimmer of light you can find. You have to be strong to survive and endure your illnesses without forgetting who you are and what you can contribute to this world.
My illness has changed me in many ways, and I wouldn’t take any of them back. A voice I once thought was lost, has been found. I’m not better yet, but healing is finally in sight. I’ve been starting to use my voice to empower and educate others. I’m going to be the voice for those whom have lost theirs. As I continue to grow stronger, that voice will only become more powerful. I can’t use my physical therapy degree right now, and that’s okay. Taking time to heal is finally my top priority. And when I’m ready, my platform will be waiting.