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The Three Words That Helped Erase the Shame I Felt About My Chronic Illness

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Since the first day I became ill with an autoimmune disease, shame was a mainstay in my life… Shame that I couldn’t do what I once could. Shame that I felt no control over my body or mind. Shame about physical and mental health problems and anxieties no one understood. Shame that I was spending more time with doctors than friends. Shame that I took more medications than my grandparents. Shame that I felt like a different person that I hated.

My condition, PANS (a.k.a. autoimmune encephalopathy), is a disorder that attacks the brain, leaving me with debilitating neurological and psychiatric problems like OCD, severe anxiety, cognitive issues and uncontrollable movements. It has the most horrible way of completely taking over your life – and even your very mind. It’s easy to feel like I and PANS are one and the same, so it’s hard for me to not be ashamed about everything it does to me.

For years, my symptoms and my shame about them were such a normal part of my existence that I almost forgot they were there – or I forgot I’d ever known a life that was any other way. However, when my illness flared up worse than ever before after my first year of college, it all became impossible to ignore.

It was then, in 2014, that my disease tore my whole life to the ground, leaving me as merely a shell of who I once was. Although I returned to school that fall, I avoided my friends as much as possible for a while because I was so ashamed of what had happened to me. I was ashamed of being that sick. I was ashamed of the uncontrollable movements and tics that had abruptly begun a couple of months earlier. I was ashamed that I could barely walk. I was ashamed that I had to use disability accommodations for my cognitive problems. I was ashamed of no longer being myself.

I felt like I was living my days wearing the most embarrassing costume of an illness wherever I went and no matter what I did. I thought my all-consuming symptoms were surely masking who I was and making the real me invisible to everyone else, like a disguise I never wanted to wear. I believed my constant involuntary movements were like the most hideous scars from my ordeal, and I was afraid of anyone asking about them, for fear of bringing my shame into the light.

In my first year away at college, I had gone to a worship/prayer service in my school’s chapel every Wednesday night. It was my safe place – a time with friends that were always there for me and never judged. When I returned for my second year, I forced myself to keep going, despite being incredibly self-conscious about myself, but my illness made me feel like an outcast. I was so ashamed of who I thought I’d become that I didn’t think I really deserved to be worshiping alongside everyone else. And I hated the way my body jerked around while I was trying to stand still to sing or pray, so I always stayed in the back of the sanctuary in order to go unnoticed.

One night, however, a leader came up beside me and stood quietly. “You know,” she whispered. “He sees you… And I see you.”

I turned and looked at her for a moment, forcing a polite smile and straining to stop my movements. I wish you didn’t see me, I thought to myself, as I resumed staring at the floor. I wished I could just disappear…

Sensing my discomfort and sadness, she gently reached out and touched for my shoulder: “I mean that I see you – not the disease. You’re so much more than that. It isn’t you.”

“It isn’t you…”

Today, three years later, those three little words continue to echo through my mind. They are the antidote to the poison of shame that haunts so many of us with chronic illnesses.

art of a woman sitting on the floor with her head between her knees

When a disease takes over your life, it can be hard to separate who you are from what your disease may make you do. It feels like you are an unreliable, self-absorbed person who always has to cancel plans with your friends. It feels like you are the one causing so much pain and trouble for everyone watching you struggle. It feels like you are the one who’s inadequate, messed up and failing in every possible domain. But it isn’t you – it’s the disease.

It has taken me years and constant reminders from my family and therapists to finally accept that I didn’t cause my chronic illness, so I am not responsible for its repercussions. Yes, I do everything I can to fight it and to not have it make me behave as someone I’m not, but the symptoms and their consequences were never my fault. I still feel bad about how much my loved ones hurt for me when I’m sick, how much longer it takes to do my school work and how much harder it is to take care of myself. But you know what? It isn’t me – it’s the disease.

Anyone who is trying to live any kind of life in the face of chronic illness, no matter how “slow” it may seem to themselves or to others, ought to be commended. It takes an incredible amount of valor to keep pressing forward in spite of a condition you know could flare up and change everything at any moment. It takes true grit to push through each day in which you’re sure you can’t go on. And even if you are only surviving but not yet truly living because of your condition, there’s no shame in that, either. It isn’t you – it’s the disease.

After 11 years of being sick, I can finally see there is nothing to be ashamed of if you have a chronic illness. We’re all doing our best, fighting for our lives. We may face both invisible and visible battles every hour of every day, just to be able to do “normal” things that others take for granted, but no, we don’t have to be ashamed – we can be proud that we are brave warriors.

We are not our shame or our diseases. Strength, courage, persistence – those are who we are.

A version of this post originally appeared on The Dreaming Panda.

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Originally published: October 6, 2017
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