Navigating a lack of privacy in life with chronic illness
Some vulnerability is inevitable, but there are ways to preserve my dignity
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When I was 12, an infection related to my central line landed me in the hospital. I was being treated at a large teaching center and clearly remember waking up one day to find more than 10 people in the room staring at me and discussing my case.
This was an extreme circumstance, but not unexpected. Because pulmonary hypertension is rare, especially in children, it always managed to pull extra eyes into the room. “You might never see a case like this again,” a resident would say.
This is just one example of how my privacy has been stripped from me from a young age.
Privacy isn’t always an option
Living with a chronic illness, you are bound to lose some of the barriers that many people might take for granted. Doctors have intimate access to a patient’s body, whether they’re assessing you physically or inquiring about things you’d typically prefer not to discuss, such as your bowel movements.
At any given moment, small dignities can be forsaken as crises take priority. For the eight months I spent in the hospital following my heart and lung transplant, the only gowns ever available were massive, drowning me and often falling down my chest. It was such a small detail in the face of everything else, but it drove my mom crazy. She and I both felt it was dehumanizing not to have gowns that fit me suitably.
Outside of clinical spaces, the exposure can be emotional, often occurring among loved ones. Being labeled as “the sick one” in social groups frequently invites conversations about my health. I don’t think this ever comes with ill intent, and I would never want my loved ones to stop inquiring about my health journey. With that said, though, it can be exhausting when the first thing everyone asks me at social gatherings is, “How have you been feeling lately?” When people don’t know much else about me, it might be the only thing they ask.
As someone who relies heavily on family for support, I must give frequent updates in times of illness. Everyone needs to know the state of my health, especially when I’m in a season of decline, but exchanging that information can be burdensome for everyone involved. Privacy isn’t always an option.
While some vulnerability is inevitable with a long-term illness, I work hard to preserve as much dignity as possible. In clinical settings, I can ask unnecessary personnel to leave the room. In social settings, I can control my health narrative in conversation. And if I ever find myself hospitalized again for an extended period, with no gowns that fit me, I’ll find a solution — even if it means buying my own gowns online. There is always room for improvement, even if it’s small; sometimes, it’s the tiny steps that make all the difference.
Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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