Mental healthcare should be part of our sickle cell management
Talking to a therapist is an important part of my care plan
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I missed another birthday celebration and had to send another “sorry, I can’t make it” message — not because I like canceling on people, but because I have sickle cell disease.
Living with sickle cell means living with FOMO — the fear of missing out. I must budget my time and energy like my life depends on it, because it does. No matter how badly I want to show up for the people around me, sometimes I simply cannot.
Although I’ve surrounded myself with people who understand my struggles, it doesn’t make it easier when I have to miss out on things that are important to them and don’t get to be a part of the memories they create. When this happens, if I’m not careful, my emotions can trigger a pain crisis for me. This begins a cycle of unpleasant thoughts that can be hard for me to sort out on my own.
The importance of mental health support
That is why I’ve begun seeing a psychologist for counseling services. Sickle cell crises have many triggers, and for me, stress and strong emotions are big ones. Therapy allows me to gain a new perspective and sort out my life problems. Working with a licensed therapist has helped keep me as healthy as possible with sickle cell.
During my most recent session, we discussed grief and how I handle it. Not only do I grieve the memories I’m unable to make with my loved ones, but I also grieve the friends I’ve lost because of this illness. I grieve the missed opportunities to advance my advocacy. I grieve the time wasted in bed on painful days.
Living and thriving with sickle cell also means living with grief, but we don’t have to tackle it alone. I strongly feel that all sickle cell warriors and their caregivers can benefit from therapy. Pain medication is not the answer to all of our issues. It’s true that sickle cell is a genetic blood disorder whose hallmark symptom is physical pain, but this disease attacks our mental health as well.
I’m grateful that my sickle cell care program is comprehensive and includes a therapist. I also have access to nurse practitioners, social workers, and an infusion clinic for pain management. I know this model isn’t available to all sickle cell warriors.
If finding a therapist has been difficult for you, there are various sickle cell organizations that provide resources for warriors and caregivers. One that comes to mind is Sickle Cell Prodigy, whose team promotes the benefits of seeking therapy and works hard to break the stigma associated with mental healthcare. The nonprofit specifically highlights acceptance and commitment therapy, which focuses on developing psychological flexibility. Its website explains:
“Psychological flexibility is the ability to adapt to internal experiences (thoughts, emotions, memories, physical sensations) and external stressors (medical uncertainty, life transitions, changing health needs) in ways that support your well-being and quality of life. For people living with sickle cell disease — and for transplant and gene therapy survivors in particular — psychological flexibility is a critical survivorship skill.”
Learning new ways to navigate and cope with the uncertainties of sickle cell disease is essential. Caring for your mind is just as important as caring for your body. If you do not arm yourself with tools and resources, it can be difficult to conquer this disease.
So I urge my fellow warriors and their caregivers to think beyond physical pain when managing sickle cell. This disease can beat us down physically, mentally, and emotionally. But with an adequate support system and a positive outlook, a better life is possible. It’s OK to hurt and grieve. But what’s not OK is forgoing the help you need to keep moving forward.
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.
Marissa Gibbings
Thank you so much for putting the spotlight on mental health, Shamonica. As a mom who watched my daughter spiral in and out of psychosis, while battling sickle cell, I can tell you without a doubt how much it took a toll on all of our lives. I did get her therapy, I did get her medications to help stabilize her emotions. None of it worked and I believe it was because her mental health providers did not fully grasp the weight of sickle cell disease. We are in need of providers who are well versed in this illness. I’m sending you a huge hug for putting this beautifully written article together. I’m so grateful for this.
Brandon
This was very informative, thanks I really enjoyed reading this.
RosaliA
It’s main point and it’s urgent to protect our mental health in the same way we make with our body.
Because we will heal more fast if we take care of our mental health.