The Importance of Lupus Support Systems
When I was diagnosed with lupus, I had just turned 20, hot off the heels of what was intended to be the first of four years going to university in Toronto. I was forced to abandon my studies and limp home, swollen knuckles clenched, every breath pinched by the inflamed lining of my heart.
As I struggled to recover from pericarditis and adjust to the debilitating affects of joint inflammation, I felt like the aspirations I had for my life had been cast out beyond my reach. How could I achieve my dreams when I could hardly lift my arms high enough to undress?
Friends and Family
My friends, too, existed in a world I could not function in; the bustling, youthful existence of working, studying, traveling, and dancing into the early morning hours.
My 22-year-old self had been body snatched, replaced by a swollen, pain-riddled version I did not recognize or want. I watched the life I thought I would be living and the worried expressions of my friends and family drift farther and farther away. They stood like specks on the horizon, a vast ocean of difference between us.
The word “isolated” comes from the latin word, insulatus, “made into an island.” And in the years following my diagnosis, that is exactly how I felt.
I became depressed, longing for the sense of belonging I used to have with so-called normal, healthy people. Within the first year, a strange thing happened: I realized that I wanted to be alone.
I didn’t want anyone else on this island that lupus had marooned me on. I had no desire to connect with other people “like me,” nor did I want to burden my friends and family with my daily struggles with lupus. I convinced myself that I could still do everything I wanted without changing anything to accommodate my illness.
I lived in complete denial for eight years, and as a result, suffered through three major organ involved flare-ups and a medication-induced case of anaphylactic shock that nearly ended my life.
Everything changed in the summer of 2009. The inflammation running rampant in my joints and tissues moved into my brain, resulting in a complete personality change akin to bipolar hyper mania. I was a helpless observer inside my head, disconnected from the strange and disturbing behavior of a body and voice I did not recognize.
The island I thought I had been on was laughable in comparison. This was what it meant to feel truly alone.
It was this wake-up call that changed my entire perspective on the kind of support I needed in order to could get off “Lupus Island” and fully participate in my life. My long recovery from brain inflammation taught me three valuable lessons.
Sending Your Message in a Bottle: Finding Your Voice
For the longest time, I chose not to speak about my struggles living with lupus. I could hardly acknowledge that I had a disease, much less articulate the emotional support I needed from the people in my life.
When my brain inflammation temporarily changed my behavior, I did many things that were out of character, one of which was starting a blog. When my lucid mind returned, I was horrified to realize that I had been broadcasting my very personal, and at the time, very manic experiences for the entire internet universe to see.
I didn’t realize it then, but I would come to understand that my blog was my message in a bottle, that important first step in recognizing I had something to say about my experiences and that it needed to come out, even if I didn’t necessarily know if there would be someone out there who would read it.
In order to find the kind of support we need, we must first be able to articulate that we need it in the first place. Whether it’s within an online blog or personal journal, expressing and validating your experiences for yourself is an important step in cultivating the kind of support system that will allow you to not only survive, but thrive with lupus.