My struggle to figure out how to help a caregiver

Over the past month, I’ve had caregivers, friends, and siblings of patients with sickle cell disease reach out to me with questions about how to better support their loved one. Each scenario I’ve read has reminded me how difficult it can be to support someone with a chronic condition. Each of these people has an underlying desire to help, but is unsure how to best do it.

Recently, for activities coinciding with World Sickle Cell Day on June 19, I attended a couple of community awareness events to share my experiences. As a panelist, I usually focus on a theme because time is limited. It’s impossible to fit my whole life with sickle cell in the allocated time frame. While I’ve spoken on mental health, the nature of a crisis, and blood donation, I decided this time to speak on celebrating caregivers of sickle cell patients.

Without my caregivers, I wouldn’t be where I am today because in my most vulnerable moments they were there to support me. I can’t imagine what it’s like to witness your loved one suffer with pain. The unstable nature of the condition means there is a varying degree of support required that many will struggle to cope with.

I could sense the sadness, guilt, and loneliness in the messages I got as the writers described their struggle to navigate around their loved ones’ needs. I was hesitant to respond to some of these people because my experience with sickle cell is not the same as all patients. Methods of care or communication that suit me might be different from what another patient would want.

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Many of the messages were about struggles with communication. I value having a conversation about my health while I’m not in a crisis and am able to take in feedback. However, I know other patients out there don’t want to talk about their experiences or health.

When I found the right words to respond, I acknowledged how difficult it can be to witness someone you care about going through a crisis. Caregiving can be emotionally, physically, and mentally demanding, so it’s essential that everyone — patient and caregiver — be conscious of that. I offered my own experience as a guide, with the caveat that it may not work for their loved one.

I can’t imagine how many millions are going through similar situations. Still, I recognize that even as we focus on awareness events, creative arts, and fundraising — and educating the public, policymakers, and healthcare professionals — there’s a power in community and sharing stories. And that includes our caregiving community.

I’d love to see more caregivers celebrate, connect, and share their stories. To the caregivers of patients with sickle cell disease, you are appreciated and not alone.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.