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Too often we caregivers are “the invisible people” in a patient’s journey, and yet we are “the vital link” in addressing the challenges. As a caregiver myself, I am reaching out to you with the deepest empathy. I know that your life was interrupted. I know that you have had to learn a whole new vocabulary. I know that you have had to deal with terrifying uncertainties. I know that you have continually been responsible for “righting the ship” in adverse circumstances. I know that no matter how full a life you had before, CLL demands to be the center of your personal universe now. I know that you are deeply committed. I know that you have had to reach deeply into yourself to resurrect forgotten skills, or to develop new ones. You are probably more competent than you think.
Currently you are invisible to me, but I need to hear from you now. Who are you? Where are you? What are you thinking? Do you have a brief comment or reflection for me? Do you have suggestions? Do you know of great caregiver resources I should be aware of? Do you have a full story you would like us to publish? I keep all conversations confidential. The CLL Society is completely willing to publish stories with the author left anonymous.
The Caregivers Special Edition of the CLL Tribune will be published in 2021.
Your input will be the vital link here, too.
Please send me an email at email@example.com with “I am a caregiver” in the title to get the conversation rolling.
A million thanks!
Co-Founder and Communications Director