The world isn’t fair. Anyone born with a genetic disease like cystic fibrosis before they’ve even had a chance to earn bad karma knows that. But that doesn’t mean we need to stand aside and “take it” when other people are unfair to us because of our condition.
While having an “invisible illness” generally sucks, we can at least pretend we are normal when we first meet people. But as the disease worsens and certain relationships require a revealing of our CF, the illness is anything but invisible. This is especially problematic in the professional world. For some employers, the illness is all they see once they find out.
Those in the United States are protected by equal employment opportunity laws and some rights regarding medical privacy. But if you’ve grown into adulthood with CF, you’ve probably experienced the flimsiness of such laws. When asked about gaps in your résumé because of bad health periods, or if you turn up in CF-related articles through Google searches, the interview process becomes difficult to navigate. You either need to be straight-up about your health, be deceitful or play vague mental aerobics games to avoid revealing the disease — which has potential to make you seem suspicious.
I’ve been rejected from multiple curricular, extra-curricular and employment opportunities because of my disease. I’m not implying every rejection has been because of my disease — the majority of rejections have been because of non-CF-related reasons. But some potential employers in my past were frank about telling me my CF was a cause for major reservations. I probably should have stood up to those people, even legally in some cases. But I was never a confrontational person. Now, though, I realize I would have been taking a stand for all disabled and chronically ill people, not just myself.
Employers often envision us using every ounce of sick leave, being too sick to focus on productivity, suing for mistreatment and making medical excuses for failures. They often envision us as weak or as a burden.
I wish they would instead recognize the relentless drive of a CF patient living every moment with urgency. I wish they’d see us meeting deadlines with high-quality work while in the ICU. I wish they’d know we are battling multiple infections while interviewing and not breaking a sweat or tremoring a muscle. I wish they’d know how many of us have self-taught advanced microbiology and chemistry to understand our disease and pharmaceuticals. I wish they’d know many of us could turn a dreary situation into one of full of opportunities. I wish they’d know how hard we worked to get where we are. Many people have told us we can’t, and so we did.
We have so much on our plates. So many things to be anxious about, so many things to fight for. So, again, it’s unfair that we have to stand up for ourselves. The advocates for CFers and other chronically ill and disabled communities who don’t have major medical conditions are to be treasured. But there simply aren’t enough of them to make the world listen to us and treat us with respect. So it falls on us, the afflicted, to vocalize our worth.
Some opportunities aren’t good for us, sure. There’s the simple reality that some (not all) CFers are physically weak or, for some, international travel could be difficult. But we have the capability of surprising in many fields of work. Difficulty produces endurance and character. Our lives have been very difficult. We have the character, we have the endurance. Please don’t make our lives more difficult because of your presumptions.
It comes down to simple statements: It isn’t our fault we have cystic fibrosis. But many of us have made the best of it and deserve a chance.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.