A strong support system is crucial for sickle cell patients
Different people provide various types of support, all of which are essential
I can’t think of one area of my life that isn’t affected by sickle cell disease — a reality that can easily become overwhelming and emotionally draining. That’s why a strong support system is imperative.
A support system refers to a network of people who are active and present in your life on both the good days and the bad ones. They do what they can to ensure you have a shoulder to cry on, are not isolated, and are included in social gatherings.
I believe these networks involve several types of support, all of which are equally important. For example, even though I have a solid support system in general, I feel I’m missing a close friend with sickle cell, or an older woman with the disease who can act as a mentor or auntie. No one else can provide the same type of support that these individuals would be able to offer me.
Different types of support
Family: This category may include parents, children, siblings, cousins, aunties, or uncles — anyone who’s known you through multiple stages of life and understands how sickle cell affects you. They’ll know who you were in the past, who you are today, and who you wish to be in future, and they can provide a cushion as you navigate life with this illness.
Because of the inherited nature of sickle cell, though, there’s a chance that some of these relationships may be plagued by guilt and blame, which can be hard to overcome.
Partner: With your significant other, you should feel free to be as honest as you wish about the impact of sickle cell, without fear of judgment or of being labeled as negative or pessimistic. This person probably knows you and your daily life the best. They likely understand your needs, big and small, and experience the day-to-day effects of your illness more than anyone else in your support network.
Friends: Generally speaking, I think people have several categories of friendships. Still, all of your good friends will need to have certain traits to support you, including patience, flexibility, and compassion. Friends who consider your needs when planning social gatherings, call you when you’re feeling down, visit you in the hospital, and try to make your life easier when you’re struggling with sickle cell symptoms are a crucial component of a strong support system.
Patient community: Surrounding yourself with other sickle cell patients is particularly important, because even though your friends and family love you, they can’t fully understand your reality unless they have the illness, too. Because I’m the only person in my family with sickle cell and I have no friends with the illness, either, a patient support group is the closest thing I have to a community of people who understand my plight.
The group I’m in meets virtually, which has benefits and drawbacks, but overall, it’s great to have the support. I find that sickle cell patients automatically share love and camaraderie with one another, which reminds me that I’m not alone.
How loved ones can provide support
It’s important to realize early on that there’s no way to remove the illness. Therefore, a traditional problem-solving approach can be highly frustrating for both sickle cell patients and those trying to help. Acceptance is key.
However, there may be smaller issues that can be resolved. For example, if a patient is unwell, a loved one can help by picking up their medication. I’d recommend being on hand to assist the person with sickle cell in any way that may be necessary.
Being a good listener also helps. Often, sickle cell patients feel as if they’re screaming into a void. Having someone who’ll listen without judgment and not offer unsolicited advice can be extremely helpful. Listening can also equip loved ones to be good advocates — something sickle patients need when they can’t advocate for themselves.
Because of the unpredictable nature of the illness, being understanding and flexible with plans is essential, too.
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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Mary Murph
I want to thank you for sharing such impactful knowledge on sickle cell disease. I raised two daughters with this very difficult devastating illness. Knowledge on the molecular system is very difficult to comprehend. Each individual is impacted differently. Health Care Professionals should keep in mind that anywhere in the body that blood circulates, pain crisis can also occur. I encourage them to take this illness just as serious as they would treat a patient presenting at the ER/Hospital with heart or stroke symptoms. Sickle Cell Disease is a Serious Matter!!