Accepting life with sickle cell may be difficult, but it’s necessary

Learning to live with our disease instead of repressing it is key to a better life

Mary Shaniqua avatar

by Mary Shaniqua |

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My last column about my medication compliance triggered an interesting conversation with my sister. I’d written about what I did to reach 100% compliance, which is great and necessary for someone who, like me, has sickle cell disease. But the column didn’t touch on how I traveled that compliance journey.

My sister and I laughed about my childhood memory of my dad finding my pills stuffed down the sofa. Then she asked me if I remembered why I used to do that. In my teenage years, I explained, I didn’t believe that anything was wrong with me. I had vague memories of being unwell in the hospital until age 6. But thereafter, any crisis pain I had was well-managed at home, so I thought my parents were exaggerating my level of illness.

I knew sickle cell was the name of my illness, and I understood it theoretically. I just didn’t think it was as bad as my parents expressed. My childhood experiences were curtailed because we feared this illness, so I think I refused medication as a sort of internal protest.

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As an adult, with far greater knowledge of the illness and the wisdom of life, I look at my younger self with disbelief — even as I type the paragraph above. How could I be so silly? In hindsight, things always seem clearer: I now see that I was silly, because living with a long-term illness requires acceptance, and at that stage I simply hadn’t accepted the facts.

When you’re living with a chronic condition, you encounter several emotional states as you journey toward acceptance. Sickle cell disease is inherited, meaning I’ve had it from birth. People often think that my acceptance of the illness should be a given, since I know no other reality. But it’s not so easy.

Steps to acceptance — and when it happens

Don’t get me wrong, I have some privilege here, and I recognize that. I do believe acceptance comes slightly easier or quicker for those of us born with our illnesses, whereas I often wonder about and empathize with people who were born healthy and diagnosed with a debilitating illness later in life. I feel that their acceptance journey is somewhat harder.

I liken it to me having sickle all my life, but not avascular necrosis (AVN), which I also have. So I frequently go into my thoughts and remember the body I once had. I remember Shaniqua the cheerleader, the boxer, the dancer, the carnival masquerader. I remember the Shaniqua who loved gymnastics and trampolining. I remember the Shaniqua who went to the gym at 6 a.m. six days a week.

I feel as if I’ve lived several lifetimes. AVN today has me feeling like a completely different person than I was before. I often wonder if people who developed illnesses later in life feel this way.

Though I can appreciate that one group’s acceptance journey may be more difficult than another’s, it doesn’t negate the fact that both journeys are still tough. Acceptance is a prerequisite for all groups of people living with illnesses if they want to lead happy and healthy lives.

When I think about my acceptance journey, a few actions spring to mind.

In my younger years, I felt a strong drive to avoid standing out or seeming different. I sought to be “normal” as I envisioned it. As I’ve grown up, however, I’ve learned that nobody is normal. We’re all different in a bunch of different ways. Embracing my sickle-rooted differences and understanding what’s normal for me are all that matters — not what the world thinks.

Second, I became an expert on my disease. Before, I’d just been winging it, taking each day as it came. In adulthood, however, I’ve dedicated time and effort to gaining expertise on sickle cell and my body.

In becoming a sickle expert, I’ve learned the importance of my lifestyle and mental and emotional state, as well as the subsequent impact these have on my experience of the illness. I had to, and continue to, adjust my lifestyle based upon my body’s demands and mental well-being. I also prioritized psychological intervention for a number of years, too. That’s helped me express all the emotions sickle cell causes in a healthy way, without suppressing them.

All these shifts have helped play a part in me learning to accept my sickle cell disease and know it’s never going away. It can’t be cured. And it’s my duty to live the best life I can, notwithstanding the illness.

No two disabled people have the same journey. We all walk unique paths. But I hope that in shining a light on the acceptance difficulties we face and speaking a bit about my own journey, I can inspire others.

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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