I forget that not everyone knows I’m sick

I’ve had a lot of awkward interactions recently. I’ve made some new friends and reconnected with old ones, yet I never know when to bring up where my Cushing’s disease is at. Is it strange if I tell them? Is it weird if I keep it to myself? Am I oversharing, or is my health status important for them to know?

With friends I’ve known for a while, I feel just fine telling them no, I can’t schedule some event because I have an MRI that day. But with friends of friends, new partners of people near and dear to me, or in truth, anyone who steps into my life now, I have a hard time figuring out how honest to be.

The tumor itself

Many people are confused about why I’m not removing my pituitary tumor, and then they’re floored when I tell them it’s because I had one removed already and a second surgery is riskier and more complicated. I was diagnosed with Cushing’s disease in 2020 and had my first tumor removed in June of that year. I had a recurrence in 2022 and have been treating it medically since then.

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People don’t know much about Cushing’s disease, at least from my experience. And if they have heard of it, it’s usually only because they know a horse or a dog that’s had it. (And by the way, please stop comparing me to your pet.) Simply saying “I have Cushing’s disease” isn’t a good enough explanation for most.

I guess I’ve been going through this illness for so long that I kind of forgot how horrifying it can be to people. I’ve been living with a tumor in my head for a while, and I’m so used to the idea that I don’t think about it anymore. Every six months I check on it, and other than that, I take meds to keep things regular. If my surgeon ever decides I’m a good candidate for a second surgery, maybe then I’ll think about it more.

Awkward!

All of that does lead to awkwardness with new people. People will see me with my wheelchair and worry about me, not knowing I’m an ambulatory user. Or I’ll have to cancel because I’m fatigued and people assume the worst. When they don’t know me, or they’re used to seeing the healthiest version of me, I guess it can be jarring to realize that my story has other layers.

I stumble through my answers, sometimes oversharing. I guess I don’t always want to sit down and give everyone the rundown of everything I’ve been through. Telling a total stranger something like, “Yeah I had surgery in 2020 during COVID-19, had no visitors, and had to stay in the ICU, which was traumatizing. Anyway … ” It’s just not their business.

So how do you respond? I’m a terrible liar, so making up another excuse doesn’t work. I’m trying to be vague in my answers. “I’m not free that day” works just as well and requires no explanation. Just like “I’ll be busy that day” is all that you need, not a full description of the doctor appointments you’ve got on tap.

Even though I share about my journey with Cushing’s disease on social media and through this column, I have the right to privacy. And with new people in my life, it’s my decision when and what I want to tell them. I’m hoping that if I keep this policy in mind, I’ll have fewer awkward encounters in the future.

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.