My husband of almost 9 years married me before my diagnosis - before the bad got ugly. Fortunately, he's still around. Without my husband, I probably would have given up a long time ago. He has been one of my main reasons to keep fighting. His love keeps me going in the hardest of times and my darkest of days. I appreciate all that he has done for me; he has honored our vows, "Til death do us part."
Sometimes I hesitantly scroll through my Facebook memories and I can see it. I can see dermatomyositis has changed me. It’s not just my overall appearance, it’s my actual facial expression. I look at the smile on the girl in the pictures today and she looks hurt or broken inside. The girl in pictures years ago, she looks alive – happy, free and full of energy.
I want to be her again, more than anyone could ever imagine. But I can’t! I can’t do 90% of anything that I used to do and when I see those photographs, my heart breaks just a little bit more. I wonder when will the day come that I no longer grieve the person I once was? The girl I can simply no longer be? This new me is different and she is having a hard time finding her way.
I am in a battle with myself, not just because I have this crazy and rare autoimmune disease. It is because my disease makes me feel like I have to choose between the person I used to be and the person my disease makes me. Throughout the day I have to decide which me am I going to be. Sometimes I have no choice because my body makes that decision for me - the sick me.
After being diagnosed with this autoimmune disease I experienced a new, unfamiliar feeling... "insecurity." A day doesn't go by without me feeling insecure. Insecurity is a terrible feeling and my disease makes it worse. I can't say that I was ever 100% secure but lately my feelings of security are almost zero. I would say that my biggest worry is over my marriage. My husband does not make me feel insecure. It's my head making me feel this way! Questions will pop in my head like: "But what if I can't be the girl that I once was? What if I won't be able to be the girl of his dreams anymore?”
My husband holds my heart and soul and he also holds the ability to break me into a million pieces. I have absolutely no control over this, which terrifies me. I need him to know that even though so much wrong has happened, I am hopeful for our future. I am hopeful that things will get better. I believe that we will grow into the people that we always wanted to be. Someday, I will no longer feel like a burden. My husband will be able to hold my hand when we are simply having fun, not just when I'm scared.
I can never thank my husband enough for backing me off that ledge. He stands beside me consistently and always tells me that it’s going to be ok. He provides me with positive support when my world feels like its crashing down around me. He is the light in my darkness and believes in me when I lose faith in myself.
Visit Understandingmyositis.org to learn more about myositis, and learn more about Myositis Support and Understanding (MSU), a patient-led 501(c)(3) nonprofit organization. Find education, ways to get involved, access to research and clinical trial matching, and learn about our various support options and live video education sessions.