The journey to accept a sickle cell diagnosis is not just the patient’s
Loved ones must accept the facts to preserve relationships and be empathetic
I recently shared my journey to accept my diagnosis of sickle cell disease. When people are told they have an illness, it not only affects them, but those around them as well. It’s therefore not just patients who have to accept the journey ahead, but their loved ones, too.
That’s especially true with an illness like sickle cell, which has tentacles that touch every facet of life. As a child, for example, I had no holidays abroad because my parents feared sickle complications. Unfortunately, that meant my siblings without sickle cell also had no family holidays, either, when they were growing up. The whole family was affected by my disease.
A loneliness comes with being a patient, and it’s particularly heightened if you’re the only person in your circles with the illness or the only person to experience it as you do. Acceptance can be one way to mitigate that loneliness.
I’m not for a second suggesting that acceptance journeys for patients and loved ones are similar, or even the antidote to the emotional tribulations that come with illness. But what’s apparent is that the journeys are linked. When a patient is surrounded by loved ones who refuse to accept the realities of their diagnosis, conflict brews on the horizon. In my childhood, for instance, sibling conflicts could have developed over our nonexistent family vacations abroad. The deprivation was not my siblings’ fault, after all.
Sibling rivalries occur even more commonly, sickle cell patients tell me, because the excessive attention they get may provoke annoyance in their able-bodied siblings. That can result in the siblings’ emotional distance or problems in otherwise conducive relationships. This phenomenon isn’t limited to siblings; it could occur with any of the patients’ close relationships.
I’ve also heard of healthy fathers who didn’t know they were sickle carriers who believed that their ill child could not be theirs, leading them to abandon the family. I hope these examples explain why accepting a sickle cell patient’s diagnosis is required for any close relationship to form and last.
Before my life partner and I got together, he was an extremely supportive and present friend and had a great understanding of my illness, including its complications and impact. Once we started dating, however, I noticed the emotional toll my illness was having on him. I had to explain that my sickle cell was not going away and he had to accept that, as well as the facts that he cannot save me, prevent my pain, or cure me.
The challenges and needs of acceptance
As Rome wasn’t built in a day, the route to accepting a diagnosis can be challenging. The patients and those in their lives must decide what the illness means to them personally, because it will affect them and their relationships (with children, parents, siblings, friends, or spouses). Those around people with sickle cell are on a journey, just as patients journey to accept the disease and themselves.
If you have a sickle cell patient you love, I’d encourage you to sit with your emotions about the diagnosis and do the necessary work to accept it. It’s especially important for parents of children with sickle cell because children with the disease must know their parent has their back. It’ll also equip parents to make decisions in a way that factors in the child’s needs.
Furthermore, it’s imperative that parents ensure siblings are given the space and encouragement to navigate their emotions surrounding the illness, too, even enlisting professional help if necessary. Too often I hear stories from patients about siblings with little empathy, or siblings who see their brother or sister with sickle cell as an attention seeker. That’s awful to hear, and it’s certainly awful for the patient experiencing it.
There are no shortcuts. Loved ones’ acceptance of a diagnosis takes research, love, dedication, and difficult conversations. But on the other side of that work is greater intimacy and the ability to truly see and understand the patient. Moreover, they’ll enhance their ability to advocate for the sickle cell patient should moments arise when advocacy is needed. Trust me when I say that patients will appreciate it.
With World Sickle Cell Awareness Day having just passed on June 19, I encourage you to consider the demand for acceptance if you’ve been wondering how you can help the sickle cell patient in your life.
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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