The Eyes Have It: What Others See

By: Amanda Kasper, Regular Contributor

Ever since I found the online world of I AM THAT GIRL, I’ve thought a lot about who I am, where I am in life, and who I want to become. In the last few months, my life has seen drastic changes and wrapping my head around how those things have changed and shaped me has been incredibly challenging. From September 2009 until April 2013, my life was consumed with chasing a diagnosis. A label, any label, that might explain to me the gastrointestinal symptoms I had been suffering with for years. My ability to eat, to go out, to spend time in public, to make and complete plans all fell by the wayside. Each doctor I saw had less and less hope that I’d ever get better. But five and a half months ago, that all changed.

In my first blog post for IATG, You Are More Than What You’re Going Through I described how my diagnosis of Mastocytic Enterocolitis (ME) had begun to impact my life. What I didn’t understand then, and what I am just now beginning to wrap my head around, is the magnitude of being diagnosed with a chronic, lifelong illness, and the implications for the rest of my life.

In truth, I went through a period of depression and anxiety. I no longer knew who I was. When I looked in the mirror, I didn’t see me, I saw my chronic illness. I saw my current struggles, my medical challenges, my financial burdens, the way my life has impacted my family and my friends, and I hated what I saw. When I felt my heart beat, it was fighting for life, not living or acting alive. The way I saw myself contained an overwhelmingly negative image that was slowly wasting away. 


In a moment of incredible loss, I wrote and sent out an email to 20 individuals, friends, mentors, and past coaches and teachers, simply asking them who I used to be. I knew something needed to change, and I hoped that the language of others could for once replace the language in my head, that I could write over the story I had paved and begin again, taking with me parts of who I used to be, and parts of who I want to become.

In the spirit of honesty, I want to share part of that note with you:

I apologize, for I know this email may be as hard to read as it was to write.

As each of you are aware in varying degrees, I’ve been going through a series of challenges for quite some time now – not just physically, but mentally and emotionally too. Each time there seems to be an answer of some sort, or a light at the end of the tunnel, the train takes a turn and the light fades out…There have been multiple diagnoses thrown my way, but very few solutions, very few options to change or improve my quality of life.

Being chronically ill, waking up everyday in chronic pain, pain that I cannot escape or walk away from, pain that never leaves, never gives me a break; being challenged to keep down food or even to eat many days; feeling like I cannot often leave my house, especially alone, has led to a lot of feelings – including that of feeling lost, and broken, alone and at the bottom.

When I look back at my life, you are the people who have known me the longest; who may remember who I used to be. When I look into the mirror, when I look into my heart, I can’t remember her. This is a question that nobody may know how to answer, but I don’t know how to find her again, and I’d really really like to. Lately, I’ve felt scared, scared to keep going, scared that I’ll never get past this.

I feel like I’ve lost my faith, and my hope. While love can be enough sometimes, for me, right now, it’s not strong enough to fall back on. It’s external. I want to know that I can find something internal to rely on, that if it came down to it, I could save myself. There are so many people I love, so many people I’d give my life for, but that’s not enough to help me find strength or courage today. I need to find things within myself, things to believe in, things to live for.

Each response, whether short, or long, came written in the present tense. They used words like "strong," "brave," "creative," "eloquent," "right brained and left brained," "outgoing," "passionate," "driven," and "determined." I found comfort that although I didn’t see it, my friends still saw who I was in who I am. They told me that these weren’t past qualities, that they were today qualities, even if I didn’t feel them inside anymore, they promised they still saw them.

About Amanda: About Amanda: Amanda Brooke is a writer, reader, quote lover, CASA advocate, and non-profit believer; seeking space as a patient advocate, public health guru, lifelong learner, passionate lover, and irreplaceable friend. Amanda tweets at @AKasper513, blogs about life with a Masters degree, a chronic illness, life, love, and following her dreams over at Welcome to Midnight. Additionally, Amanda writes over at Below the Radar, a community she co-founded to create "the opposite of loneliness" for chronic pain and illness warriors, fighters, and survivors.

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  • commented 2013-10-24 10:51:27 -0700
    Thank you so much David, not only for your stories and your truths, but ofr your persistent compassion. Your support means everything to me.

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