Struggling with a lack of privacy in life with chronic illness
Since I got sick, I've had to be more vulnerable than I'd like
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“What have you eaten lately?”
“You’ve lost weight.”
“You’ve gained weight.”
“When’s the last time you felt that depressed?”
“How much urine did you collect?”
“Spit into this.”
“I need your blood.”
“Take off your shirt.”
“The marks around your breasts? Let me see.”
“Can you explain exactly how you figured out you have Cushing’s disease?”
“Prove it.”
“Show me.”
It wasn’t until I gave birth to my daughter that I realized just how little privacy you have in the hospital. I was practically naked, blood dripping down my legs, as I was prodded and told when I could and couldn’t shower. I had to explain my discharge and allow providers to insert different tools inside of me to check how dilated I was.
The weird part? Since then, I’ve talked to tons of moms who have explained how jarring it was. They were amazed at how they had to whip out their chest in front of a stranger and felt incredibly uncomfortable with a provider touching them, prodding at them, and looking at them.
Privacy and illness
I, however, was unusually comfortable with it. And it’s not because I’m super comfortable with my body, but because I’ve been forced to be vulnerable almost constantly since I got sick.
Since I was diagnosed with Cushing’s disease in 2020, I have lost my sense of privacy. Through my pituitary tumor removal surgery in 2020, a recurrence, and even my current treatment plan, I’ve had to be more open than I’d ever want to be.
To help diagnose Cushing’s disease, many doctors perform a physical exam. They might look for a “buffalo hump” and examine your breasts, stomach, and legs for symptoms such as striae. Some may request pictures of bruises, hair loss, acne, skin issues, or other visible concerns.
Mental health is a key part of care, as Cushing’s disease can cause depression, anxiety, suicidal thoughts, and even rage. Therefore, I regularly have to talk about severe episodes of sadness or bad fits of anxiety with my doctors. I also have to open up about issues early on to my therapist to ensure my illness isn’t negatively affecting my relationships. I don’t have the luxury of time.
It’s not just doctors
Strangely, when you get sick, many people seem to think they have a right to know your story. Strangers will ask incredibly personal questions. Friends and family will point out changes. My weight, hair, and skin are all topics of conversation.
To an extent, this is inevitable. Doctors need to examine my body occasionally to effectively treat and care for me. Still, I don’t enjoy the lack of privacy. Many healthy people deal with bruises, scars, and anxiety, but they’re not evaluated as much. It makes me feel like I’m under a microscope, constantly being observed by doctors, friends, family, and the world.
Since I’ve chosen to be so open about my disease online, I get four or five messages daily. Some ask questions about their own health, but others want my test results and pictures — which I’m not always willing to share. Don’t get me wrong, I love helping people, but I try to answer questions without giving too much of myself away.
I’m sure many other people with chronic illnesses feel the same way. It can be hard to know how much you should share, but ultimately, the decision, like your body, is yours alone. For me, it changes day to day. On some days, I’m willing to share a lot, but on others, I want to hold everything close to my chest. There’s no clear-cut answer. I just know that I have less privacy in my life now.
You can also follow my journey on TikTok and YouTube.
Note: Cushing’s 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 Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
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