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This Is Why I Think It’s Acceptable to Let Your Chronic Illness Define You

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So often, we question who we are and how we define ourselves as individuals. This seems to fluctuate throughout the years as we self reflect, experience life events and grow, and as we accomplish things that we set out for. Sometimes, we change through no choice of our own; you have to take what life throws at you and adjust yourself accordingly. For me, it was illness. I was diagnosed with multiple diseases at the age of 28 very unexpectedly, and it took me a while to grasp how serious and life changing it would be.

Speaking as someone who never imagined a life with rheumatoid arthritis or Sjogrens or fibromyalgia or mental illness, everything in my life that I had and was working towards felt like it went up in flames. There was the me prior to becoming ill, brimming with positive qualities, but then I saw a different me after becoming ill that brought out parts of my inner being I didn’t know existed. All of the traits that I had and loved vanished somewhere in between my layers of pain and depression.

Lately, so much of what I am hearing is:

“Don’t let your illness define you.”


“You are not your illness.”

Although I can appreciate the lesson trying to be taught here, I have been feeling like I am drowning in a sea of motivational quotes that were written by people who may not actually have had experiences with chronic illness. I’m supposed to acknowledge that I am a person with rheumatoid arthritis, Sjogren’s, fibromyalgia and mental illness. I am supposed to just think of it as me having disorders, never changing who I am, but existing separately from me. These phrases are supposed to be optimistic and make you feel like you haven’t lost the core of your being, but they don’t resonate with me.

Believe me — I have tried to see myself and illness as two separate things. I have tried to describe who I am outside of me being ill, but as someone who has had to deal with life on life’s terms and experience the drastic changes that came after my diagnosis, I am responding with, “how can it not define me?” I don’t think someone else gets to speak your truth for you or make you feel bad for not seeing things as they do. I’m denying who I am if I say otherwise.

Illness defines me in that new characteristics and traits came out in me to fight and live with my diagnoses. I changed, my body changed, my mental state changed, my way of thinking changed and the things I cared about changed as a direct result from my illnesses. My illnesses have taken away my ability to work and earn an income. They have made me fearful to go to the doctor’s, to do simple daily activities and to live a life that I want to live. They make me feel like I don’t hold purpose and have lost my identity. I’ve gone from never wanting to have to depend on others to having to ask for help more in these last five years than in my entire life. Sadly, I have been able to feel my mind turning to places that were dark, and feel myself grasping for parts within that I thought were reserved for tragedies.

Alternatively, current me values life a lot more. For the past five years, I’ve done nothing but advocate for myself in the medical world. I have found strength that I would have never been introduced to had I not had to get procedures done or endure excruciating pain and fatigue. I’ve learned how to write out my feelings about my illnesses so that others might connect or even just understand the constant struggle within. I’ve gone to therapy to specifically confront being sick and to try to accept all of the changes in myself that occurred.

Others may be able to live their lives seeing themselves and all of their defining traits separate from their illnesses, but I can now see myself in totality. It’s as if I was living life just knowing primary colors, but then one day an experiment was conducted, mixing the colors together, and I am now able to see so many other colors. I had select attributes that I felt told a story about who I was, but my life was tested, and new qualities surfaced from those challenges. I am more mindful and cognizant now more than ever before, and am now able to see a complete picture of everything that exists within myself.

Getty image via primipil.

Originally published: January 13, 2020
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