A Steady Stream of Roadblocks and Detours: When Chronic Illness Gets in the Way

When it comes to chronic illness, there are very few warnings or words of wisdom that patients receive, but on the miniscule list of those that we do the fact that chronic illness will change your life is actually included. What isn't included, however, is the ways in which it will do so (both big and small). People will absolutely tell you that things are going to change as a result, but nothing will prepare you for how it actually happens.

I had my first introduction to "your life will never be the same" at the age of 15, when I was diagnosed with PTSD. My psychiatrist told me about the medication, how the stream of flashbacks, nightmares, and panic attacks would ebb and flow. How my symptoms may worsen as my world expands, how my treatment plan will require tweaks and shifts as I grow. I was naive enough to think that her simple words of warning would be enough; that my experience with flashbacks, nightmares, and panic attacks before diagnosis was going to remain my experience with them for ever and ever amen. In short, I was wrong. When I was attacked, I was young. At 13 years old I was the definition of a late bloomer, in the sense that I had another 2 years to go before puberty was fully underway. After the inciting trauma, I had a stage of intense denial; bottling it up and forgetting it entirely. This worked in the short term, until I was forced to come to terms with it a year later. I discovered that ignoring a problem doesn't make it go away, it makes it worse. When I was officially diagnosed with Post Traumatic Stress Disorder, I was in an uncomfortable in between. Still in a state where I was awkwardly mid-pubescent, the only eyes that followed me hungrily down the school hallway were those of the person who attacked me. This was the first change.

I waited for an adjustment that never came. Panic attacks became daily occurrences, spending every other bathroom break shaking on the floor. Flashbacks came almost as often, blacking out for periods of time and coming to with bruises on my arms and legs from slamming myself around. Then came the second change. As I finally reached the end of puberty and the beginning of not looking like an 11 year old, there were more eyes in the hallways. There were eyes on the street, in the grocery store, seemingly everywhere. My symptoms got worse. I was skipping class to hide in the bathroom, my grades were dropping as I spent all my time at home in a state of dissociation instead of working on homework or studying.

My second, more daunting introduction to the concept of an altered life came at the age of 17, when my suspected depressive disorder gave way to new episodes of mania. I was hospitalized for the second time at the end of my junior year and diagnosed with bipolar disorder. This was not like PTSD. There was no chance of complete remission, no matter how slim. My life would now be riddled with episodes, new medications, and hospitalizations. It lived up to its promise, and I was hospitalized an addition 2 times within 12 months of my diagnosis.

The third time around seemed like nothing. As a veteran to "your life will never be the same" I thought of myself as more prepared than the average bear. And though I was more prepared than some, there is nothing on this earth that can truly prepare you for life with a physically debilitating, incurable genetic disorder that has the ability to wreak havoc on each and every one of your body systems. Nothing prepares you for the world's most sadistic game of russian roulette: which joint will pop out next? Which organ will quit next? What function will I lose next?

Bipolar disorder and trauma pulled me out of the arts high school I had spent 3 years working to be accepted into. They sabotaged my first three semesters of college, and put a hold on the fourth. They left me homeless, made finding a job difficult, and scared my legs permanently. I was so proud of myself in December when I finally got it all back on track. When my meds stabled out and my moods improved, and I was stable enough to start 15 hours of classes in January. I was killing it; I moved into my own apartment, I was hoping for a promotion at work, I was making straight As and loving my classes. I was happy, even if I was having more asthma symptoms than normal. Even though my seemingly idiopathic joint pain stuck a cane in my hand as I walked from class to class on campus. Even though my hips and knees began twisting weird, and I started falling more, and things grew more and more difficult.

I was happy and thriving until I wasn't. The change seemed to happen so quickly, my body shrinking to half my previous size. Strong muscles withering in size and strength. I went to the doctor again, finally making myself go after an orthopod yelled at me when I went in about knee pain at 16. I was 19 now, and worsening. The news confirmed a deep seated fear that had been brewing in the back of my mind: Ehlers Danlos Syndrome.

I knew it, that my life would never be the same. I had lived it before. It still did not prepare me for losing a chance at a promotion, for rude professors, for withdrawing from classes I was excelling in. It did not prepare me for a wheelchair, losing the ability to drive, for tiring out after an hour outside. I didn't expect to lose things like going to class, 6 hour shifts, or going to church. Nothing prepared me for getting fatigued after watching Netflix, passing out almost every time I stood up, or planning every single outfit around my braces and mobility aids. I was a dancer, an actor, a swimmer. I was an over energized and occasionally annoying friend, driving an hour or two to goof off with friends and staying up late laughing with my partner.

Nothing could prepare me for the fact that I can't even shower unassisted anymore. For the fact that my body was falling apart. For the fact that my body seems like it's out to get me. When they tell you that chronic illness changes everything, they mean it. It alters every single aspect of your life, especially the ones you think that it won't. It will put school on hold, it will make bosses frustrated, it will annoy friends, lash out against favorite foods, confiscate your favorite hiking trail, take away your favorite hobby, it will alter everything. You won't have a day off, a vacation from reality, there are no breaks.

It doesn't mean the end, however. You'll make new friends, and strengthen relationships with the ones who didn't run. You will find a new accessible trail, a new favorite food, a new way to go about school. You'll find a new favorite hobby, or a way to adapt your old one. Remember that it will change everything, but that doesn't mean it will end everything.

I'm not writing this from the perspective of someone who came to this realization months or years ago. I am writing this as a person who struggles with this still, who struggled with it today, and who has only come to this realization as I began to write this all down as a means to vent frustration. I realized as I was writing, that this very blog is one of many new adaptations. It is the creation of a new sense of community, a combination of my love of writing plus my fingers hatred of pen and paper journaling. I suppose this is a reminder to myself that change leaves room for adaptation, even though it sucks sometimes.