The value of bodily autonomy for those of us living with cystic fibrosis

I learned about the notion of bodily autonomy from a dear friend who, like me, has cystic fibrosis (CF). Before, I’d been oblivious about the subject; it hadn’t occurred to me that it was even a topic for consideration. I’ve now dived deep into this matter, and it’s spurred a monumental shift in my mindset and sense of my own body while living with chronic illness.

It’s hard to rumble with the fact that I haven’t had much jurisdiction over my body since birth. Being in and out of the hospital more times than I can count will do that to a person, I guess. What most folks don’t understand is that when you spend extensive time in the hospital, you’re allowed only minimal privacy and choice.

Before my double-lung transplant seven years ago, my hospital room was a revolving door. Several people filtered in and out of my room day and night, including specialty doctors, physical therapists, nurses, nurse assistants, cleaning staff, cafeteria workers, phlebotomists, IV nurses, case managers, social workers, nutritionists, registration receptionists, and floor secretaries.

These are just some of the people I can remember off the top of my head. Between my 24/7 antibiotic schedule and respiratory care regimen, I didn’t have a break.

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I’ve had to be desensitized to being seen naked and having others poke and prod my body. Waking up in a hospital bed to a nurse hovering over me is always startling. I understand they have a job to do; they need to keep me on my IV schedule, for instance, and it doesn’t matter whether I’m awake as they do it. The same goes for phlebotomists who stop by at 5 a.m. to draw labs; I’ve woken up to that, too. People have removed my shirt to prevent infection while accessing my port-a-cath, and it’s strange to pretend it’s normal to be topless while a stranger stabs a needle into my chest.

I know health professionals consider those tasks normal because they do them every day, but it doesn’t make me used to it. I’ve had to fight with medical professionals to be involved in the decision-making process regarding my body. Standing up for what I know works best for me has run up against some egos, resulting in my having to switch providers. I won’t talk about what transpires when I go against their recommendations, which are more dictates than considerations.

That’s just the medical side of the story.

I’ve noticed that this issue of autonomy spills over into my personal life, as well. I’ve had experiences with people who think their opinion is more important than my decision. Since I’ve needed help while living with cystic fibrosis, others seem to assume that they should be consulted when I’m sick. They believe they’re entitled to know everything about my health just because I needed assistance during a season of life.

I’ve learned that no one has the right to dictate my life just because I’ve needed help. Most able-bodied people don’t need others’ permission before making major life decisions, and likewise, I don’t need anybody to dictate what’s best to handle my disease and live my life. To me, that’s a complete invasion of privacy that strips me of my dignity and value as a capable human being.

Having a disability doesn’t mean that I’m too incapacitated to make choices about my body and life. I deserve to have bodily autonomy just as much as those who are able-bodied. My body belongs to me, and it’s my choice how I want to live in it.

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.