The Sickle Cell Diaries: The Psychological Impact
I’ve decided to begin writing about my experiences with Sickle Cell Disease for a few reasons. Firstly I would like to keep a log of all my experiences for reference, mainly for quick personal references. Secondly, I hope to educate those who don’t fully understand what it’s like to live with the disease. Finally, I want other suffers who may be searching for online support systems to know that they’re not alone.
Last year I created a sub-reddit specifically for Sickle Cell. My friend, and fellow sufferer Jimi Olaghere has kept it pretty active with information, so be sure to check it frequently.
I wanted to start off by writing about the psychological effects of Sickle Cell because it’s one of the biggest areas that gets overlooked. For those who don’t already know, Sickle Cell causes physical trauma by way of thinned red blood cells that get trapped while traveling through the body. So many don’t realise how much of an affect living with Sickle Cell has on the mind, because they only associate the disease with its physical impact. I will definitely be talking more about the pain and physical trauma itself in these diaries, but I decided to begin on psychology because it’s something that affects me every day, even when I’m not in pain.
It’s been a while now since I was last hospitalised from a Sickle Cell crisis. This is mainly by choice because I despise the hospital so much that I like to fight it at home before giving in. I advise against this for everyone else though, because in its most extreme state, Sickle Cell can get progressively worse.
Though it’s been a while since I was admitted to hospital. I still suffer from aches and pains on a weekly basis. They’re not always bad enough to cripple me, but it can definitely be draining. Most of the time I hide my pains from the people around me because either I get worried that they’ll think I’m faking for attention, or because I don’t want people to worry about something that will likely pass in a few hours. Because other people don’t understand Sickle Cell, they can look at you and think you’re completely fine when you’re not. So I often opt to suffer in silence to avoid appearing like I’m faking for attention.
The Affect on Friendships and Relationships
Living this way has a huge impact on friendships and relationships. I’ve grown to be a pretty introverted person, and someone who often prefers being alone over around others. I’ve tried to change this over the past few years, but after being conditioned this way for so long it comes with challenges.
It all started in my youth. It was extremely difficult for me to build proper friendships with other kids. At such a young age it’s hard to explain to friends that you can’t play because you’re in pain, or that you need to relax in case your pain comes back. Not to mention I’d often be away from school for weeks or months at a time. Children can hold an “out of sight, out of mind” mentality. So with such common absences I missed out on many bond building opportunities as a child. I grew to be that child who was just in his own world; living inside my imagination instead of in the real world. There were a few friends that continuously showed an interest in me through my childhood whether I was sick or not, and I thank those people for being there.
It wasn’t until later life that I made stronger bonds with people, who were able to understand and empathize with my situation. But because I’d already been conditioned to not open up with people, I would refrain from mentioning my struggles with Sickle Cell until they became too apparent to ignore.
Relationships with the opposite sex can always be tough with Sickle Cell sufferers. But as long as your partner understands your needs and your limits, it should never be too much of an issue. Sometimes stress and sexual intercourse can bring on on a Sickle Cell crisis, and this can cause the sufferer to feel obsolete or inferior. I’ve learned that talking through these issues with your partner is essential. A Sickle Cell sufferer’s partner will play a crucial part in their lives, so it’s important that both people understand each other, and this has become something I look for in my relationship.
The Link Between Sickle Cell and Depression
There’s an extremely thin line between Sickle Cell and depression and/or anxiety. I also feel like there’s a lack of support systems in place to help with the mentality of sufferers. There’s been times in my life where I wished I wasn’t born, and holding these kinds of thoughts can be dangerous. People with Sickle Cell can develop slower than other people, or grow shorter, or skinny. These are all things that lead towards feeling inferior, and that feeling of inferiority can develop and affect the sufferers outlook on life. For these reasons, it’s important that a sufferer has many people in their life that they can open up with about their feelings.
Along with the depression, I also suffer from emotional deficiency. For example, the only time I ever cry these days is when I’m in hospital with my crisis, which believe it or not is a bad thing. Sure, men don’t like to admit to crying, but crying is a natural thing for all humans, and sometimes we need it to feel better and move past situations.
Unfortunately I feel like my emotional balance is thrown off, because being in that hospital is always the worst thing for me. So anything else in life can happen (like someone in the family passing) and I’ll appear completely insensitive towards it. This can have an affect on the people you love, as they may think you don’t care, or that you’re unable to show them your emotions.
There’s so much more I could write about when it comes to the psychological impact, and I certainly will continue to cover it in these diaries. For now, feel free to leave comments and questions on what I’ve expressed. Feel free to also suggest other topics to cover using the form just below.
