Open Letter

An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives

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Dear Unexpected Pain in My Ass,

You’re not what I imagined and you’re not what I asked for. You can expect me to feel angry, disappointed, and wrestle with self-pity. It’s easy to blame you. But I’m learning that you’re just a catalyst, and I am the cause – I move my emotions.

You’re here and I’m trying to get used to that, but don’t expect me to welcome you with open arms. You didn’t think you could stomp on the portrait of my perfect life and have me just stand by idle. I’m shaken and stirred, but I’m not down and out.

You force me to look at my loved one in a way that challenges my ideas about love and relationships. I never back down from a challenge and ideas can change.

You make me feel vulnerable, stripped down, and even defenceless. But I’ll dig deep and find another gear. The callus from your wounds will be my armour, but it will never make me callous. It will never harden me.

My friends don’t understand you, which means they hardly understand me anymore. But I’ve met some other people along the way, some people who know you well. They’ll help me move through your unpredictable and wily ways.

Physicians deplore you so much, they hardly notice me. I’m okay being in the silent minority, walking quietly but carrying a big, life supporting stick.

Your habit of poking your nose into my life, my work, my family, my solitude, into every space that I live and breathe, is exhausting. But you can’t deflate my will or wreak havoc on my resolve. I’m like a finely tuned All-in-One – scanning, printing, copying, and faxing my way to making sure you go on yours.

So to you, the disease, illness, affliction that shakes my life, I say: You may have made me, but you won’t break me.

Yours sincerely,

The Unsilenced Caregiving Minority

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About the Author

Mark Stolow , President and CEO, The Caregiver Network

Mark is a seasoned social entrepreneur and change marketer. He co-founded The Caregiver Network, the largest caregiver learning network in the country, and helped to shape the Canadian caregiver agenda through policy and program development, research, and breakthrough communications initiatives. / Mark est un entrepreneur social expérimenté et un marketeur de changement. Il a co-fondé le Réseau aidant, le plus grand réseau d’apprentissage pour les proches aidants du pays, et a aidé à façonner la mise en valeur des proches aidants Canadiens à travers l’élaboration de divers programmes et politiques de recherche, et d’initiatives de communications innovantes.


    • Thank you for that feedback Marianna. Your encouragement is all we need to keep advancing our efforts. We’re always happy to hear that we’re connecting with our caregiving community.

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