Avoiding illness as an immunocompromised patient is frustrating

Is there a worse feeling than when someone you love is unwell and you can’t help them?

Because I have sickle cell disease, my immune system is compromised. This means I can catch illnesses easily. When I do get sick, it can be disastrous.

A typical cold or flu can land me in the hospital. I’ve had pneumonia countless times, and the flu has led to me being put on a ventilator in the intensive care unit on several occasions.

This reality makes me hypervigilant about avoiding getting sick. I frequently wash my hands and use hand sanitizer since long before the COVID-19 pandemic started.

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Avoiding getting sick helps to limit my risk of having a severe sickle cell crisis and being hospitalized. My loved ones know that if they are sick, they need to steer clear of me. At work, I make adjustments to avoid being exposed to illnesses. I steer clear of risky environments, such as hospitals, unless absolutely necessary.

Sickle cell is a congenital disease, so I have lived this way practically my entire life. That doesn’t mean it’s easy, though, and I often must miss social activities. And when it comes to helping others who are unwell, I feel inadequate.

A difficult trip

I was recently traveling with my partner when he became unwell. I desperately wanted to look after him, but sadly, I couldn’t, at least not in the way that he would do for me if the roles were reversed.

He had a fever, which meant I was at significant risk of becoming ill, too, if I spent too much time around him. Because we were abroad, the last thing I wanted was to be hospitalized in another country.

We are engaged to be married, so we both fully understand my limitations due to sickle cell disease. In preparing for marriage and having children, we have discussed a protocol if one of the children is sick at home. But all of that is theoretical, and when I was in a real-life situation of risk, it made me feel terrible. I couldn’t return the favor for someone who would move mountains to look after me. I was distraught.

I considered taking the risk anyway. Fortunately, my partner brought me back to my senses and was intentional about keeping a distance between us. In doing so, he ensured that I didn’t get sick. Unbeknownst to me, that was a crucial move, because I suffered a sickle cell crisis the next day that lasted a week and ruined my holiday. If I’d gotten sick on top of that, it would’ve been a bad situation.

I’m thankful that my partner is so thoughtful and considerate of my needs. But it makes me extremely sad that I’m unable to care for loved ones when they’re unwell. I am a problem-solver, so it’s hard for me to be unable to offer solutions.

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.