A Message to the Younger Fighters Who Follow My Chronic Illness Journey


Tired eyes stare at the screen, blurring the images as you scroll through the hashtag of your most recent diagnosis. The quick movements, combined with incessant fear, exacerbate your already flaring nausea. You divert your gaze to the photos of fellow fighters, noticing their sickly pallor, tubes and struggling. You wonder if this is what people see in you. Does it foreshadow your future?

Support for illness is essential to coping. Your healthy friends and family are great, but nothing compares to mutual understanding developed from firsthand experience. That is why technology is a wonderful apparatus for receiving support. Instagram, Facebook forums, Tumblr blogs… They all connect people across the globe. But social media can be more detrimental than helpful when each like, comment or photo sends you into a tailspin of comparison.

After my gastroparesis diagnosis, my best friend and I connected via Tumblr. (Shout out to Sara… Hi, Sara!) Being newly diagnosed herself, she had reached out for advice. We were only 14 and oh so scared. I had not had my first feeding tube placed and she was at the point in her illness where her doctors were considering one for her. Many of our conversations revolved around other patients requiring feeding tubes to manage their symptoms or enduring severe complications from disease, some even resulting in death. In the midst of our unease, we were both absolutely convinced that would be us in the years to follow. Now age 20, we are no longer 14 and grief-stricken over our assumed demise. Her health drastically improved. Mine deteriorated. And neither of our conditions progressed in the exact manner we once feared. But a negative situation produced a forever friendship flourishing with support every step of the way. There is rarely a passing day we do not speak.

I reflect on the above because it conveys a piece of advice I wish I had known then. Following the stories of others with similar conditions and forming special bonds is immensely helpful. Acquiring knowledge through their experience is practical.

However, you cannot predict your impending future based solely on comparisons portrayed via social media.

Chronic illness is the beginning of a journey with numerous routes. Guidance from those familiar with the road makes it easier, but the pit stops, detours and roadblocks inevitably differ, and you may lose sight of each other at a few red lights. Stalling in fear to compare directions only inhibits you from reaching your unique, final destination. When the light turns green, you may end up at another place entirely. I realize you are scared, but keep going.

This post originally appeared on Hospital Princess.

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