In this article, I want to share the experience of someone living with sickle cell who is courageous to express how mental health has affected her, living with a long-term chronic disease.
Living with sickle cell is like walking on a lonely, dark, slippery road; fighting a battle through bad days so that one can live the best days of one’s life. It’s a life that is ingrained in pain as the blood flows through one’s veins. Little wonder that we are called warriors.
Mood swing is one of the mental health challenges a sickle cell warrior battles with. This could be between a high mood and low mood, or normal and not too normal mood. Oftentimes I feel strong, energetic that I want to do several things at a time and conquer the world, with this feeling comes the passion to be thorough and diligent in what I do and all I do. I don’t just want to do these things because I must do them, I want to do them dutifully and appropriately because I want to make an impact in the lives of others, the community and my world.
Some other times, I feel so low, fatigued, dull and not interested in doing anything. I feel so dispassionate about pursuing my goals, performing my tasks, and making an impact. Sometimes, I feel so moody and gloomy that all should end. I feel so hopeless that I doubt my ability and feel nothing is working. But over the years, I have learnt to pull through and come out better.
I always say, living with sickle cell disorder is living in a body that pulls a constant stunt on one anytime, anywhere, and anyhow and this experience can be daunting and draining. Making simple plans such as having job interviews, planning a birthday party for my son, or attending a family gathering is always done in fear.
There are many failed dreams, frustration and disappointments associated with living with this disorder which eventually takes its toll on our mental health. Growing old with sickle cell is an aspect that is neglected and never discussed because as one grows older with this disorder, coupled with the effects of long-time use of pain medications, there are several challenges that spring up unexpectedly and this also begins to affect one’s mental health. My personal experience has been that of fear of the next crisis which means I can’t really make any long-term plan, which I’m not really happy about.
I lost my parents in the space of 16 months, between 2020 and 2021. This was a great shock to me. A year after trying to recover from the death of my mum, suddenly my dad died too. My dad was my greatest cheerleader always encouraging me to soldier on. I began to feel depressed like nothing is worth fighting for as they had been major players in my fighting for survival. I remember praying constantly to God that they will not see me die.
Most recently, these past months, I began to experience floods of emotions, and mood swings that were difficult for me to deal with. I started having the following feelings; brain fog, anxiety, loneliness, panic attacks, the feeling of isolation; nothing was of interest, difficulty in assimilation, forgetfulness and eventually I became depressed.
All of these were triggered by grief and the fear that things were not going exactly as I had hoped, which is a ripple effect of living with sickle cell disorder over the years, as one spends most time fighting to stay alive than planning on how to lead life in the real sense of it.
I felt the clock continually ticking and my productivity was depreciating as my energy level was constantly dropping. I became lost in my world and anxiety set in. This triggered a pain crisis episode and I know without a doubt that the crisis was from my brain. I was torn between fighting to survive or giving up.
It got so bad that I had to reach out to some sisters in the community for support and at a point seek medical help when I was losing it and felt my brain was shutting down and I was diagnosed with “mental distress.”
But the thought of my son and those I inspire kept coming to my mind, as my life has become a manual for some. I summoned some resolve and begged God for another chance to live. Another battle was won but my recovery was slow because I was weary and lonely even though I had people around me, but no one seemed to know what I’m going through.
In as much as we look into treating the physical pain, we must also put into consideration the mental and psychological effects of living with a chronic illness such as sickle cell disorder, especially among adults.
In conclusion, psycho-social support is essential among family, government, and society at large for anyone living with a chronic illness like sickle cell disorder and should never be underestimated or under-emphasized as it is important for the total wellness of anyone living with sickle cell.
If you would like to get in touch with the warrior who wrote about her personal experience of living with sickle cell, do so by contacting her on, @swintfoundation, on Instagram. And do checkout my blog: My book on sickle cell – How To Live With Sickle Cell and my other books are available for purchase on www.amazon.com
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