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How Chronic Illness Has Taught Me to Be the Authentic Me

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When I was little, one of the many of the things I wanted to be when I grew up was an actress. I was always infatuated with the art and music scene and loved watching movies and getting caught up in the atmosphere of the film I was watching. My friends and I would put on performances in the backyard for our parents and I was in school plays when I got older.

I have often related to being an actress with my illness. For many years I have been acting along in the role of a healthy person, but underneath it all, living the life of a person who is chronically ill. I got to a point where I would pep talk myself into being normal or healthy each and every morning.


I did this for me, but also for the others around me. When I do not feel well and I act the role of a sick person, that can bring people around me down. It can make an afternoon outing ruined because I am sick. I noticed that changes the mood for everyone. It can make a romantic getaway into a long and silent trip. It can cause these long awkward moments of silence. I always felt that if I put on a brave face, acted like it was all OK and controlled my environment to keep everyone else around me happy, I would be happy too.

Recently, the more I am healing, the more I am learning that the character I play each and every day is not the real me, it is my role. I have been working on letting go of the phrase, “I am sorry” since honestly, I am not sorry and this is not my fault. I have this habit of apologizing after a few days in bed again, a seizure or a setback. I have this false sense of letting everyone down. That is when I go into the award-winning role of Annie who makes sure everyone else is OK, that my environment is controlled and therefore I too will be OK.

This sometimes involves controlling other people around me too. It is my coping mechanism by default. I have been learning that this is not how life works. I have been realizing that is only setting this false sense of security for myself. I have been working on admitting that sometimes I am not OK, even if this makes others uncomfortable. It is hard for me to do, but it make things much easier. I am working on this daily because old habits sure do die hard.

Being the real, raw version of yourself is hard work. I do not think I will get to full remission until I can let all of that acting go. Going through treatment makes you come face to face with the many sides of yourself. That includes the good, the bad and the ugly. It is easy to convince yourself that your behavior is OK, to find someone else to blame for your actions or to just shove those thoughts into a box in the back of your mind. It is easy to make excuses for yourself and others.

When you face those things that are buried deep down and sort through the learned behaviors and the roles you play each day and truly face your genuine self, it can leave you feeling incredibly lost. It is more complicated than finding one role to play every day. The process is more like finding bits and pieces of each role and finding the best traits of each. It is like a transformation, a change of who we thought we were into who we really are and as beautiful as that is, it is rather uncomfortable.

This weekend, I had a moment to connect and think on all of these changes and transformations. I took a trip to a Wildflower Preserve and took an hour or two to connect to the silence, watch the butterflies and animals and see all of the flowers in bloom. In this silence I remembered how as a child, I used to get these intense growing pains that would wake me up in the middle of the night. It was painful. I could feel my body growing. Going through treatment can feel so similar at times.

As uncomfortable as being the real version of myself can be, it cuts through a lot of pain and discomfort that I would have gone through by controlling my surroundings. Reality can be brutal and the truth can hurt, but it cuts to the chase. Each day I have been feeling more like myself all of the time, not just behind closed doors, when I am writing in my journal or with certain people. If I do not feel well or it hurts, I say I do not feel well and it hurts. I have learned that makes some people incredibly uncomfortable and that is OK. That is how life is.

In order for movement to happen, sometimes things have to feel irritated and uncomfortable. We see this honesty and this truth so often in nature. Unless a butterfly went through a period of darkness and discomfort it could never become a butterfly. Maybe this experience is my cocoon and life after is my butterfly moment. I am willing to go through this discomfort and stop playing a role for that.

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Thinkstock photo via Tishchenko.

Originally published: July 11, 2017
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