If I wear a high-cut top or a scarf, you won’t see the 15-cm (almost 6-inch) line plunging from my neck to my cleavage. The scar is a big giveaway that I am not a medically stable person. One of the reasons I don’t feel very self-conscious about my transsternal thymectomy scar is because it adds a bit of visibility to my invisible struggle. I like to look at it as a watermark of my ongoing battle.
I still remember standing in the bathroom and staring at myself in the mirror about a week prior to my surgery. I took a black permanent marker and drew a line down my chest, where my scar is now. I stared at the black line for hours. At the time, I had been nothing but excited because the operation offered me something that I thought I wouldn’t have again — hope.
As I stood in front of the mirror looking at the ink on my chest, I realized that even if the operation had no positive effect, this was still going to be a life-changing moment. I was never going to look like your average 20-something again. Hiding the fact that you’re sick suddenly seems like a nice benefit once you are deprived of it.
My scar acts like a natural filtering process. The way people respond to it determines the way I will perceive them from then on. You get the people who just stare without trying to hide it; they usually are the ones who also ask you directly about it. I respect that. If I’m not going to any visible effort to hide it, you have absolutely every right to ask me about it. My scar is my story and I will gladly share it with you — most days.
However, if you are going to stare at it and not say anything, I might pour my drink all over your outfit. Those people who blatantly stare at my chest, but avert their eyes as soon as my gaze meets theirs, need to stop staring or ask directly in a respectful manner. Otherwise, it makes me feel like a monkey in a zoo cage — except you did not pay to stare at me. So, stop it. If I have enough energy to go out and meet new people, I definitely do not want to feel like a circus animal.
Images like one of my removed thymus gland are a very real part of my life. I find them fascinating and intriguing. Even though I am not a medical student, medicine has forced itself into becoming a big part of my life. I do not expect of you to feel the same, but if you intend to be a big part of my life there are definitely going to be times when I disgust you with scans, photos of tumors, or by bragging about my bruises from failed IV lines during hospitalization.
Hospital life taught me that these things are not going away, so I might as well be excited about them. I like looking at my file and checking my blood work, I stare at my X-rays and, as my friends will know, I forward pictures of my removed thymus gland.
Like most girls my age, I do get self-conscious about things. My disease did not make me immune to human error. (If only that were one of the perks!) That would have made this debilitating illness somewhat worth it. It has, however, taught me not to sweat the small things.
As most people with an autoimmune disease are advised to keep their stress levels to a minimum because too much stress can mean a flare, it really is not a choice. I have learned to embrace the glorious mess that I am, even the anything-but-little wave my fringe always makes. Once you learn to relax, things tend to get better. Intravenous immunoglobulin therapy made my wrists strong enough to start painting again, which has always been a great stress reliever for me. I try to look at my scars as the paintings of my struggle, on my body. They are basically medicinal tattoos.
We all have different ways of coping with the scar tissue we have because of illness or side effects. The way you respond to what life pitches at you is up to you. I prefer to look at my scars as paintings of the poetry of my life instead of seeing them as ugly reminders of pain. They are a physical reminder of when you overcame pain. Everyone has scar tissue; some of us just can’t hide ours as well as others.
Life is beautiful, never stop fighting.
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.