People with cystic fibrosis aren’t lazy. We’re straight-up exhausted.
The energy-sapping parts of this disease are often misunderstood
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“Why are you so tired? You don’t even do anything.” Cue all the puzzled facial expressions.
Prior to my double-lung transplant eight years ago, I slowed down a lot. As my cystic fibrosis (CF) lung disease continued to progress rapidly, my energy levels and ability to function outside my house declined. I didn’t have the energy or the breath to keep up with everything and everyone that I once did.
On the outside, I looked normal. But on the inside, there was a war raging in my lungs that nobody could see. When some people saw me resting more, declining invitations, and cutting my work hours, it gave them the impression that I was lazy. They vocalized their confusion over what I might be doing with all of my free time and assumed that I would be doing nothing.
Others compared my abilities to what my able-bodied peers were capable of doing and decided that I was being lazy if I didn’t participate like they did. If I didn’t volunteer to do all the things like others my age, I got glaring side-eyes. Assumptions ran wild that I must have an abundance of energy and endless time to pour into others, but didn’t utilize it.
Sharp words leave lasting wounds
It’s also a common misconception in medical settings that people with CF are lazy. Every time I laid down to take a nap while hospitalized, a medical professional walked through my door and wondered why I was sleeping again. Or when pressed by medical professionals, I admitted my activity level had been dwindling, which raised some eyebrows.
People thought that if I looked good, then I must feel good. And if I was stepping back from a lot of the activities that I used to engage with, well that must mean that I’m lazy. Words pierce like swords and leave a wound in their wake. I’ve had to do a lot of damage control to heal from assumptions made about my exhaustion levels.
Admittedly, I felt guilty. Their opinions got to my head. I pushed past my capacity, and often ended up really sick as a result. I quickly learned that I could trust my innate expertise on my own body. Despite looking healthy, I knew the truth. And I had to rest in that.
Living with CF is exhausting. Prior to transplant, it expended all of my energy just to breathe, not to mention the continuous fight against respiratory infections and decreased lung function. Post-transplant, I wrestle with medication side effects, steroid-induced diabetes, and kidney damage. These are just a few examples, but if I listed all the reasons why I’m exhausted, it would fill an endless file cabinet.
Laziness indicates the unwillingness to do something. Believe me, I’m not unwilling. I want to do all the things. I long to have endless energy that would enable me to live without limits.
But that’s just not the case with my health. I do have limitations. Even though I don’t always want to admit it, I have to listen to my body or else I suffer for it. And I’ve learned that it’s not worth pushing myself when I’ve worked so hard for the health that I do have.
Slapping the label of lazy on people with CF is not only unfair and hurtful, it’s just not true. It takes enormous energy to show up at baseline, let alone when my health is in crisis. The disconnect between reading about CF and understanding my lived experience is dramatically different. People with CF aren’t lazy, we’re legitimately tired.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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