Managing Expectations About Life With a Chronic Illness

I recently started a new job with a charity, and my new colleagues are hands down the most understanding group of people I have ever worked with. 

I’ve always felt the need to avoid the subject of my health during job interviews, but, as with my previous job, a quick Google search of my name led my interviewer to all the things I write about my life with sickle cell disease. When it was brought up in conversation, I was anxious but not surprised.

My nerves were quickly settled, as the questions were heavily focused on how I could be helped while working with the company. I explained to the manager my treatments and triggers, and, in an attempt to downplay sickle cell, I bragged about how I hadn’t been hospitalized in over two years. 

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I wanted the manager to have confidence in the decision to hire me, so I made it seem as if I had everything under control and that my health wouldn’t be a hindrance. But the reality is that when dealing with a lifelong condition like sickle cell, unpredictability is a big thing. It’s practically impossible to predict the future. While I pride myself on being optimistic, I need to find a way to temper that by also being realistic. 

I left the meeting feeling great, only to be hospitalized a few weeks later due to an extremely painful sickle cell crisis — the worst timing ever! I’d just started a new job where I boasted about how well I was doing, and there I was, feeling the worst I’d felt in a long time. I was a little embarrassed to tell my manager I was unwell, and I felt as if I had let my team and myself down. 

These thoughts weighed heavily on my mind, so I brought my work laptop with me to the hospital. At least I could still show up for meetings, do my work, and prove myself as an active member of the team. But as soon as my manager noticed what I was doing, he put a stop to it immediately and told me to focus solely on recovering, which was the right thing to do because any additional stress could have worsened my condition.

Being hospitalized is never a pleasant experience. I would have preferred to be doing a million other things. But the experience — and my manager’s response — reminded me that my health is a priority and should come second to nothing. I was reminded of the unpredictability of life, especially life with a chronic illness. I need to come to terms with the possibility of things not going my way and do a better job of managing my own expectations.

Have you ever downplayed the severity of your condition? What was the result? What lessons did you learn about better managing your expectations? Please share 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.