Some days, it’s just a routine of taking your medications, going to your doctor appointments, pain, fatigue medication side effects etc. Some days it’s just normal to not be normal. Other days, like for me today, I’m crying.
I’m crying because yet again, I’m facing another health battle. There’s a sting to this battle though. Because I have faced it before and well, thought I had won. Even my doctors called me a success story. And even used my case at a teaching conference. I held on to those words and was damn proud of myself for winning against this yet another rare disease. And one that left me with visible scars and insecurities.
When you are a chronic illness patient, sometimes you get used to being sick, but please don’t mistaken that with being okay with being sick. Maybe some individuals are. Maybe I’m just not accepting of the fact that I have chronic illness and I will always have some form of chronic illness. Maybe this is more about acceptance than it is about anything. Or maybe it’s just grief.
In reality we cannot control things. And often we do not get to choose what life will give us. I understand that lesson. Truly I do, but that does not mean that I do not grieve sometimes what life decides to give me. I do not get to choose what battles that I will face or reface. That stings a bit. It really does. When you hear the words remission, you know that means that you understand logically a condition/disease can and might reactivate again. It’s just the way the human body is. You logically understand that, but sometimes emotionally you don’t fully grasp it. That’s me right now. I accepted my scars. And I struggle with the insecurities of those scars, usually daily. And I’m struggling with the idea of possibly having more scars.
Some people say the scars we have make us beautiful because it speaks to our inner strength and resilience. Maybe that is true. And when I look at it fully, I do deep down believe that. Do I see them as beautiful, truthfully I don’t. Am I a beautiful human with scars, yes.
Having an autoimmune condition is hard. It feels like your body hates you, or at least sees you as a threat, so it attacks itself. It’s hard because you wished so badly that your body would just listen to you, when you say, “hey body, it’s okay, we don’t need to hurt ourselves. We are not really a threat.” But no matter how hard you try to tell it that, it never listens to the pep talk.
When I was nineteen, I realized what it was like to have an autoimmune disease. Lichen Planopilaris (LPP). It’s a form of alopecia that attacks the scalp and it is very painful. It was extremely hard to go through, and it caused extreme anxiety and depression for me. That was all worsened due to the fact I could see and feel the difference of what was happening to my body. Doctors don’t fully know why it happens, but it is believed that possible stress can cause it. But for whatever reason, the body attacks your hair follicles, and not only that it decides to leave you with painful and ugly scars. It did this to me.
I remember when I went to a PCP to get a physical, I had been so nervous and embarrassed to tell the receptionist on the phone what was wrong so I scheduled a full physical. I remember when the doctor came in and she said with a chuckle, “So I hear you’re losing your hair.” I cannot describe how incredibly much that hurt and how ashamed I felt. Not to mention afraid. I literally withdrew into myself. Yes, medical trauma is real. Thankfully the dermatologist they sent me to was kind, gentle and understanding. I still look up to her to this day.
I do not know why we as humans are ashamed about health conditions that happen to us. We are not at fault for what our bodies decide to do. I wished I could grasp onto that more for myself. To say firmly and actually believe it when I say, “Laura this is not your fault. This is not your fault.”
I often feel like an oddity. The sickie. The rare person that the medical world doesn’t always know what to make of. I often joke about it. I think I do that because when I joke about it I feel less afraid. But don’t be mistaken, I am afraid. It is a very heavy burden to be a person who comes down with rare and unknown conditions. It’s a heavy burden that I have been carrying for a while. And it is overwhelming some days. Very overwhelming.
Before I sat down at my laptop to write this, I was in tears. And I cried through more than half of this, to be honest. I’m feeling a bit better, cause like my therapist often asks me when I am overwhelmed, did you write it out? This time I did. And I’m glad I did. But I’m also feeling better because I don’t feel as much of the need to hide my scars. I have LPP. It’s not my fault. It never was and it never will be. I am insecure because of it. It is very vulnerable to not feel or appear as what is "normal" for many people. It hurts your self-esteem. And anyone can feel that for whatever reason.
While feeling overwhelmed about this condition reactivating, I do what I often do, I look for others who have it or a similar condition. Because I know that they too understand it. I googled “famous people who have LPP and alopecia” and many famous people popped up. Powerful and badass people. Many who are women. And one stood out to me and actually sang a powerful song. The singer who sang “Scars To Your Beautiful”, Alessia Cara, struggled with alopecia throughout her childhood and teen years. I related so much to her story. And felt incredibly seen and heard. And less alone.
Health conditions often give us insecurities and leave us with feeling all alone, ashamed and embarrassed. Ones that leave the scars behind are also a reminder to us of what we have faced. Sometimes I think that is the hardest part.
The perception of how others may view us is also hard. Though I have found those who are gentle and kind will see you for who you are. They view what we view as our imperfections, they see as just being human. I don’t think I will look at my scars as beautiful, but I can look at the person I am that has these scars as beautiful. Cause I am. And I know that.
"You should know you're beautiful just the way you are
And you don't have to change a thing
The world could change its heart
No scars to your beautiful
We're stars and we're beautiful"
- Alessia Cara
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