Recovery From a Sickle Cell Crisis Requires Attention to Mental Health

Dunstan Nicol-Wilson avatar

by Dunstan Nicol-Wilson |

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Ah, here we go again. I should have known. If I drank more water, if I wore a hat, if I didn’t walk up all those stairs, if I didn’t eat so much, if I didn’t stress, if I didn’t have so much fun, I wouldn’t have had a crisis.

Previously, when I had sickle cell crises, I would always blame myself. “I’ve set off one of my triggers. This is why I’m in pain. I’m so stupid,” I’d tell myself. But this is such an unhealthy way to think, because there’s only so much one can do to avoid all of the situations I’ve just mentioned.

As I touched on in my previous column, I’m teaching myself that it’s OK to be sick. But it isn’t as simple as just telling myself that — it took time and patience to get to where I am now. After a hospitalization in 2018, I realized that I desperately needed to change my way of thinking during recovery. Until that point, I had always focused on being better physically, but I’d never really considered the importance of mental recovery, too.

Recovering from a crisis takes time, but what really takes time is believing that you can get back to how you were — your version of normal, before the debilitating attack. Over time, your body will recover, you’ll be able to walk again, and maybe you’ll get back into running and possibly the gym. But until that 2018 crisis, I hadn’t realized that recovery wasn’t complete until I had cleared the mental hurdle, that wall of negative thoughts that was telling me I simply can’t do it.

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After my hospitalization three years ago, this wall felt insurmountable. I felt as though I would never overcome it, and that was my breaking point.

I remember that day well: It was a rainy summer day, typical of England, and I was driving back from a friend’s house. The negative thoughts just hit me. “You can’t do anything. You won’t amount to anything. You have no value but sickness,” I told myself. I was overcome with a wave of emotion, and I drove the last stretch of that journey in tears. I had never felt that level of helplessness before. Mentally, I had had enough.

I sat in my car and just cried. It was as if I was crying for every crisis I had ever had. Usually when I get a crisis, I don’t feel sadness, but rather anger and annoyance at my own actions that led up to it. I would just constantly blame myself. Then, I would move on and forget about it.

But this time, it felt as though the emotional shackles I had subconsciously placed upon myself were broken. For my anime peeps, it was like Mob when he reaches 100% due to immense emotional trauma.

When I finally stopped crying and the voice blaming myself dulled, I went inside and saw my younger brother. I burst into tears again. Upon reflection, it was probably because the insurmountable wall of negative thoughts had been all about me. However, seeing my brother piled on more thoughts: “I must look so weak to him. How can I be strong for my family? Why am I always sick?” The wall grew taller.

It took me a while to calm down again, thanks to a lot of positive reassurance from my family. This highlighted to me how important it is to have a support network to pull you up and help you over that wall. I must continue to learn to process my sickle cell crises better, and to avoid building upon that wall of blame.

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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.

Comments

Josie giandalia avatar

Josie giandalia

One of my sons have sickle cell he has suffered his whole life. He’s 43 and has been in ICU twice! His joints are always hurting especially his hips. I marvel at his good nature.. nobody would ever know he has sickle cell!
My heart is broken for him!!!

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Josie. Thank you for sharing. Well done to your son for continuing to have a good nature, that's so inspiring. I wish him and your family well!

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Jeremiah Wheeler Sr avatar

Jeremiah Wheeler Sr

Hi,my name is Jeremiah Wheeler and I have SCD. I'm 43 and it's a battle every day. I never thought about the mental health aspect of SCD. I've heard it all "don't work, where a hat, all or nothing about mental health". I did good working for Pepsi Cola. With having acute chest syndrome 3 times and 2 hip replacements I've done great. But we do need more help for mental health care. Because some people don't understand about how it works. My doctor had started me on L-glutamine and it actually works that and arginine (Nitric Oxide). I just wish SCD would get more attention than what it get now. Thank you for your news letter. If I can be of any assistance please feel free to contact me I'll put out material or whatever.

Reply
Dunstan Nicol-Wilson avatar

Dunstan Nicol-Wilson

Hi Jeremiah,

Thanks for reaching out and sharing your journey! So amazing to hear that despite the challenges you have faced, you've kept moving forward. Also happy to hear you were able to find something with your doctor that works for you. I appreciate that so much, thank you!

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