Sickle cell disease can take a toll on a person’s mental health, too
The disease's impact on one's emotional well-being is often overlooked
Living with sickle cell disease comes with a heavy cost. Much of your time is spent seeking to understand your body, how the condition impacts you as a person, and then adjusting your lifestyle to maximize this knowledge. This is a never-ending process because life takes you through seasons, physically as you grow, but also emotionally and socially. All of these can affect the condition and, in turn, have an impact on your health outcomes.
Our mental health also can be affected by the illness, but sadly, this is seldom spoken about in any meaningful way. This results in patients feeling scared and alone, and having nowhere to turn to, even when they recognize that something is wrong.
I’ve shared my thoughts on how important preventive care is. I would include mental healthcare in this.
Why does sickle cell affect our mental health?
There are a number of factors at play in how sickle cell disease affects our mental health.
Trying to stay healthy while battling sickle cell often means living overcautiously, making strict lifestyle choices to minimize any risk of adverse health outcomes. For example, drinking alcohol isn’t forbidden for sickle cell patients, but alcohol causes dehydration, and for most of us, dehydration is a trigger for crises. A person with sickle cell disease might naturally decide against drinking alcohol, even though this could have an impact on their social life and career, especially if they work in an industry with a drinking culture.
For me, infection is a major crisis trigger, and when I look back at all the times I’ve been in intensive care or the high-dependency unit, all of those experiences were caused by infections. So catching bugs is serious business for me. It’s not something I can be complacent about. This means, even before the COVID-19 pandemic, I frequently washed my hands and never went outside without hand sanitizer. I have sanitizer gel in my handbag, antibacterial wipes at home, and I have both in my car — just in case!
Having to constantly live on high alert like this is draining and can lead to heightened stress, anxiety, or depression. The irony, of course, being that stress can also trigger a crisis. Nothing is ever simple with sickle cell disease.
Navigating the negative stigmas that are often projected onto sickle cell patients can also impact our mental health, as can recurrent hospitalizations, frequent brushes with one’s mortality, financial pressures due to illness, missing out on key life milestones, and social and family functions. Each of these can trigger low moods, a sense of extreme hopelessness, depressive episodes, or stress and anxiety.
But imagine a single person encountering all of these things at once! That’s often the life of a sickle cell patient.
How to know you need help and what to do
No two people are the same. Just like the same illness can affect two people differently, it can also impact people’s mental health differently. There are some signs to be vigilant about, however. They include:
- Social withdrawal, or suddenly backing away from relationships and being unable to maintain the standard social routine
- Emotional dysregulation, such as having excessively intense emotions
- Feelings of hopelessness, that is, suffering low moods, extreme sadness or despair, or a lack of hope for the present and no view of the future
- Thought loops where you are stuck with a series of negative, repetitive thoughts and feel trapped
- Aggression and outbursts, i.e., seemingly random and frequent instances of highly charged behavior or being triggered by a relatively minute matter
- Difficulty maintaining personal care and hygiene that meet your usual standards
- Hypersexuality, or a sudden increase in seemingly reckless sexual behaviors
- Substance abuse, that is, experimenting with harmful substances in excess, or being reluctant to take and manage medication compliantly.
Well done if you’ve been able to identify that you or a sickle cell patient dear to you has exhibited any of the above-mentioned behaviors. Admitting you need help is one of the hardest steps.
Once you’re there, you can reach out to your medical team for a referral or search for a licensed therapist yourself. For me, it was important to have a therapist who understood hemoglobinopathies, because all my concerns had sickle cell at the root and there is no facet of my life that the disease does not invade. I didn’t want to have to teach my therapist about my condition. I deal with enough of that already.
You can also check out the Sickle Cell Disease Foundation, which offers resources on mental health on its site.
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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