My siblings’ advice for supporting a loved one with sickle cell disease
What my brother and sisters have learned about my illness
I recently shared my thoughts here on why accepting the reality and implications of a sickle cell diagnosis is essential for both patients and their loved ones.
One element of my support system is a virtual group of sickle cell patients. We all aim to share knowledge and support one another as needed. We were recently discussing support for caregivers, which then morphed into a discussion about family. There were so many upsetting stories about disagreements or difficult relationships with siblings because of a lack of understanding about sickle cell disease. It broke my heart.
Fortunately, I have a good relationship with my three siblings, none of whom have the disease. They’ve had their own individual journeys toward accepting my illness and understanding the impact it’s had on them.
In hopes of helping other siblings of sickle cell patients, my brother, Samson, and sisters, Lizzie and Deborah, offered their advice on navigating this relationship. Here are the messages they shared with me, lightly edited for length, style, and clarity.
Samson’s advice
As an older brother to someone with sickle cell, it’s been a challenge over the years to put my selfish thoughts and feelings to the side to be able to be supportive to my sister when she’s in the hospital suffering from a sickle cell crisis.
I remember from an early age watching a video about sickle cell and being taught to understand the toll this condition takes on people and how it can be an inconvenience to their everyday livelihood. But maybe because the video was for children, it never really delved into the full effects of the severity of the illness.
For years my sister has been in and out of the hospital, and I’d be lying if I said I didn’t, at times, feel inconvenienced having to take time out of my day or change my plans to be with her. But hearing about many sickle patients’ unfortunate hospital experiences, some of which have been fatal because of mistreatment from healthcare teams, highlighted the importance of family member advocacy for a sickle patient.
It’s also really opened my eyes to the fact that each crisis and hospital visit is very serious and shouldn’t be treated as “Oh she’s in the hospital again,” as I’d thought.
The advice I’d give to anyone who has a sibling with sickle cell is that your feelings are valid; you’re allowed to be frustrated, upset, or annoyed because of the effects of the illness on your life. But importantly, you need to be able to put those feelings aside and understand your sibling is suffering unimaginable pain. Be present for them, both at home and at the hospital. Try to help them stay healthy with reminders about medication compliance, water intake, exercise, and healthy habits.
Lizzie’s advice
Growing up with a sibling who has sickle cell is indeed very challenging.
No one likes to see their loved ones in pain. And it’s particularly hard to watch someone you love so much in such immense pain. You can feel hopeless because you know there’s not anything you can do to take away their suffering. It’s a horrible feeling.
I’d advise anyone who has a sibling with sickle cell to educate themselves about the illness. But importantly, communicate with your sibling about their experience, as sickle cell doesn’t look the same for any two people. Assess what triggers their crises and what preventive measures they can implement. Sometimes crises are inevitable, so remember it’s not necessarily something that can be avoided.
Always remember to not let the disease distract you from who they are — your sibling.
Deborah’s advice
Growing up with an older sibling who had sickle cell was challenging. In my younger years I didn’t really understand the disease or the ramifications of it. I just knew that sometimes my sister would be unwell, and she’d need me to spend time with her in the hospital, keeping her company and looking after her.
As I got older, however, and I began to understand the pain my sister was in, it became harder to be around her during her crises. So I’d visit less, and I believe that put a strain on our relationship. Looking back, that was extremely selfish of me, but it’s a characteristic synonymous with being a teenage girl.
Now, as a young woman, I try to understand how I can be there for my sister.
My advice to anyone with a sibling who has sickle cell would be to talk to them and ask them what they’d appreciate from you so that you can support them in the ways they need. And stay vigilant to things you know can trigger a crisis so you can do your best to help them avoid one.
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.
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