Misconceptions of Autoimmune Disease - A Story About Heartbreak
I started writing here with one goal on my mind: raise awareness for autoimmune disease. This is a story I’ve never shared before except with those very close to me but I feel compelled to write about it now in the spirit of spreading awareness during this month that has been dedicated to doing so.
I was diagnosed with Scleroderma / Mixed Connective Tissue Disease in Spring 2001 at 19 years old after many years of doctors visits with different symptoms. I was very confused and scared and I knew by the look on my mom’s face this wasn’t good. What she had learned was heartbreaking enough for a mother. The two words I noticed to be associated with Scleroderma in whatever I read about it at that point were “incurable” and “fatal”.
I shared the news with my family and close friends who shared my confusion and we did our best to make sense of it with the little knowledge we had and the little information available at the time . I turned to my then boyfriend and, looking for comfort, I told him what I had just learned. The very first thing he said to me was “What? I can’t catch this, can I?” My heart sunk down to my toes and broke to pieces. Needless to say, he wasn’t my boyfriend for much longer after that. But that one sentence changed me forever in an instant.
From that point on I kept it to myself. Anyone I would meet in college, all the boys I liked and went out with or wanted to get to know… I wouldn’t ever DREAM of trying to explain something like this to them. It felt like a secret I had to keep. How do you begin to explain something so complex to someone? I even had to explain it to nurses at the time because that’s how rare it was nine years ago. It would have been easier to just say “I have cancer” because then people just get it, nod their heads, and understand they cannot “catch it”. I put up a wall and promised I wouldn’t ever put myself in a position to feel that awful ever again so I rarely told anyone about my condition.
I lived my life and it was easy to pretend I was fine with limited bad days, a busy schedule, and I was on meds (methotrexate —which, in large doses is chemotherapy) that supposedly had me in remission. Little did I know that one day it would ravage my body and set sights on my heart, changing my life forever once again.
During that period and in the years since I have even gotten a handful of people that hear “autoimmune disease” and immediately stop listening —and I guess upon hearing the word “immune” they go “Oh, like AIDS?!” Well, NO it is nothing like HIV or AIDS. You cannot acquire an autoimmune disease through contact, or “catch it” that way either. You are born with a predisposition to it. It is in your DNA. It is your body’s failure to regulate one or many of it’s systems. In my case, it is overproduction of collagen (scar tissue) and a disease of the small blood vessels. My body cannot regulate it’s healing reactions and it goes into overdrive and attacks not only the germs but its own organs (i.e: the case with my heart).
I got many surprise reactions from many people when I was told my heart was failing in 2007. They had no idea where it came from. I always seemed fine, like nothing was wrong, and it even caught me by surprise. But I had kept my autoimmune disease a secret for so long that it was time to share my story and spread the word. If I can help even one woman or teenage girl avoid the confusion and unreasonable shame I felt then I feel I have done something good. No boyfriend should ever ask this question of their girl ever again.
In a world where autoimmune disease affects 1 in every 13 women it’s quite impossible to believe that 90% of people cannot name a single autoimmune disease.
Let’s please change this. The more we know, the more research gets done, the more of a chance we find cures and ways to manage this terrible diseases. Or even better, prevent them.
These days I have a man who loves me and my scarred heart to the end of time. He’s got my back in this quest to heal myself and change the game in autoimmune diseases awareness.
I would love your help in doing so as well.
2 years ago • 5 notes
