A better resolution for those with chronic illness and disability
This year, I'm practicing self-love instead of focusing on hospitalizations
At the end of each year, it seems like everyone and their dog publishes a round-up on social media of all the wonderful things they experienced in the previous 12 months. It’s great, as I love hearing about the good that happens in people’s lives. Too often, we seem to focus only on the bad things.
I’m not exempt from sharing these year-end memories, but my focus is a little different from my peers. Because I have sickle cell disease, at the end of each year, I ask myself: How many hospitalizations did I endure?
It took me a while to identify this thought pattern, but since 2019, I’ve measured each year’s success based on how much time I’ve spent free from the chains of a hospital bed. This might not seem like a terrible exercise; after all, who wants to be in the hospital? But this way of thinking is actually harmful.
Sure, there are things I can do to reduce my risk of having a sickle cell crisis — which occurs when sickled red blood cells block blood flow to the point that tissues become deprived of oxygen, resulting in excruciating pain — but the reality is that being sick is not my fault. It never has been and never will be.
Therefore, am I not doing myself an emotional disservice by using hospital admissions as my single metric of success?
I can do all the right things and strictly follow all of the medical advice I’ve been given, and yet the sickled blood cells in my body might still be unruly and have their own painful party. When I’m ill, it’s not because I’ve failed.
If, God forbid, I had to spend an entire year in the confines of a hospital bed, would it make me less successful as a person? The answer is no. Success isn’t defined as the absence of illness. Would I dare imply it is for the countless disabled people who have gone before me and spent their lives battling an illness? Would I dare say these lives were unsuccessful? That would be egregious.
Of course, I logically understand all of this, but it’s much more difficult to implement it in my own life. Too often, I vilify myself because of circumstances beyond my control. Well, 2024 will be the year I stop doing that. Therefore, I must do the necessary work to call out that behavior, both in myself and my community.
Don’t get me wrong — I want to live as healthily as possible. I think improved health should be a goal for everyone. We get only one body, and I view it as part of our spiritual duty to look after it. But wanting to live healthily and using health as a metric of success are not synonymous.
Living with a disability takes an enormous amount of strength. Society often seeks to “other” us, because it’s constructed without consideration for our participation or quality of life. Those of us with disabilities may not vocalize our every battle or injustice, but it doesn’t mean our lived experiences are inconsequential. We possess a strength that can only be understood by those who have experienced illness firsthand.
For this reason, simply getting through the day as a disabled person makes one successful. Going through periods of illness and bouncing back to baseline makes one successful. Combating the inevitable waves of depression that illness causes makes one successful. Teaching others about an illness makes one successful. Advocating for much-needed change in healthcare institutions makes one successful. Screaming into the abyss about the pain and the hardship makes one successful.
So, this year, I’m doing something different. This year, I’ll stop measuring my success based on how long I can stay out of the hospital. Instead, my pledge to myself is to live, and to live well. And if I happen to fall ill along the way, that’s OK. New year, new me, as they say.
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.