1 step forward, 2 steps back — and trying to stay sane through it all
My recent crisis seemed to shove me back to a phase I thought I'd overcome
If you’re a regular reader of this column, you probably noticed I’ve been silent for a few weeks. Unfortunately, I had a sickle cell crisis and was hospitalized.
The good news is that I’ve been discharged and am home, where I’m progressing toward full recovery. The other news is that this admission saddened me for various reasons.
In May, I talked with a friend about how much my health had improved over recent years, despite sickle cell disease. When he asked when I’d last been hospitalized, I responded that I didn’t remember — which was true!
When I recounted this story to my fiancé, he did remember my last hospitalization — because it had affected his initial plan to propose to me. That was a year earlier, in May 2023, which made me excited; I’d reached one year without any admissions!
To then be hospitalized a few weeks later felt like what we in Britain would call “Sod’s law” (Murphy’s law in the U.S.).
I’ve shared how my menstrual cycle had become a sickle cell crisis trigger for me, starting roughly three years ago. Recently, however, it seemed to have stopped; I went three months, from April through June, without any crisis pain when my cycle began.
For me, three months suggests a trend. I can use my data and experiences to form conclusions regarding my health if I’ve had such data and experiences for three months. In this case, I got excited; had my chapter of pain crises each month come to an end?
Then July arrived.
The pain cycle resumes
Not only did the pain crisis return with the start of my cycle, it came back with a vengeance. Those monthly crises, though of course painful, are ordinarily the sort I can manage at home with rest, heat, and pain relief medicines. But this time nothing was working.
My first step was getting to the hospital’s day unit for stronger pain relief without the headache of an admission. But even a day spent at the unit did nothing to relieve the pain, sadly. I had to listen to my body and go to the emergency department, which led to me being admitted after all.
When I take a step forward, it feels as if this sort of process comes along and forces me two steps backward. Every single time. It’s extremely disheartening. I feel as if I’m making progress, only to be sent back to a phase I thought I’d overcome.
This emotional journey also makes it hard to codify the feelings in writing, perhaps to help others better understand my experiences. I feel a whole raft of emotions about this difficulty: frustration and anger, but also annoyance. I can’t direct those emotions anywhere, either. Should I be annoyed at my own body? I mean, I could — but I feel it doesn’t help, because it does nothing to stop my feelings or the risk of such events happening constantly throughout my life.
All I can try to do, it seems, is not internalize negative feelings about myself and my body, and embrace the up moments when they come and make the most of them.
Maybe there’s something to trying to rewire my mind regarding what I define as progress. But that would be extremely difficult because I don’t think anybody can see hospitalizations as a good or even neutral thing. Across cultures and beliefs, we can all accept that being admitted to the hospital is bad.
For others living with sickle cell disease or a similar illness that causes major life interruptions and sporadic hospital stays, what are your coping mechanisms? Please share them in the comments below.
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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