As sickle cell patients, ‘we all need somebody to lean on’
Why it's important to be open and honest about your health needs
As I write, a familiar chorus plays in the background, followed by the line, “Please swallow your pride.” Aside from the hook, I’ve never really listened to the lyrics of Bill Withers’ “Lean on Me,” but this line struck me.
As someone with sickle cell disease, my stance used to be, “It’s my health, so it doesn’t concern you, and you don’t need to worry.” I took pride in hiding my sickle cell because I believed it was my burden. I viewed it as excess baggage I didn’t want to bring into a relationship.
Growing up, society taught me that there were more important things to be concerned about than my health. I needed to learn how to be strong, how to lead a household, and how to bring something to the table in a relationship. Unfortunately, nobody ever taught me how to navigate a chronic condition with a partner.
On reflection, I can see how going it alone damaged my relationships. I could never say no to activities that might trigger a crisis because I wasn’t “supposed” to have sickle cell. I could never be fully present because I was hiding my pain. I couldn’t be vulnerable because that would mean exposing the emotional, mental, and physical damage I’d been carrying in silence.
Then, when I eventually slipped and it was too much to carry alone, I’d back away because I felt ashamed and wanted to avoid being pitied, and thus my relationships would break down. I’d lied about my condition, which meant there were many more instances throughout our relationship when I’d lied. My partner had finally seen a side of me that I told myself didn’t exist.
In those relationships, it must’ve been horrible for my partners to witness my eventual crises. There’d been no warning or discussion about what to do in that scenario. I still remember the fear in their eyes.
If I’d been open and honest about what I was going through, the relationships could’ve had more depth and mutual understanding. I could’ve shared the load with my partner.
Learning to be open and honest
Nowadays, I aim to be open and honest from day one. I’ve discussed in a past column when to tell a prospective partner that you have sickle cell. At this stage in my life, that information is probably one of the first things I need to disclose. It’s unfair to both parties for me to withhold it, and being open can prevent some future emotional pain.
Discussing sickle cell is always complicated, but it’s even more so during a crisis. Explaining my needs on one of my better days helps my support network know what to do. I know the people who care about me will always worry about me, but sharing more information can help ease some of their concern.
Having a partner who’s knowledgeable about your needs can also be lifesaving. Every sickle cell patient I’ve spoken with has a story about being mistreated in the hospital. Having someone with you who can advocate on your behalf could be the difference between life and death. As Withers sang, we all need someone to lean on when we’re not strong.
It’s also essential to comprehend that it’s OK to be sick sometimes. Crises are devastating and significantly affect the physical and mental well-being of both the patient and their partner. Accepting this fact, however, can improve relationships and communication. We all have pain and sorrow we can’t control.
Being open and honest about sickle cell doesn’t necessarily mean shouting it to the world. It can simply mean allowing those who care for you to respond in your times of need. We’re allowed to lean on a partner, or even a network of people, when we need help carrying the load.
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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Comments
Victoria Wolfe
Dunstan,
I loved this post - thank you so much for sharing it. As someone who has endured a life-threatening disease, I just want to add that leaning on someone is often a sign of great strength; surrendering is often a sign of great strength. Sometimes we fight so hard to stay independent and hidden that the source of great comfort and peace escapes us. It is not a be-all or end-all but it is timely consideration and acknowledgement of needs in a moment and the best way to address them. Thanks for your column. I'm sure it will help many people who struggle with which path to take on any given day. Be well.
Dunstan Nicol-Wilson
Hi Victoria. Thank you for your kind words and also your wisdom. I agree there is strength in being vulnerable, be well also!