Just because I’m feeling better doesn’t mean my Cushing’s is cured
What I wish people understood about living with a chronic illness
“How are you feeling?”
“Me? Oh, a bit better.”
During the holiday season, I have a version of this conversation repeatedly. My family and friends have seen me at my worst, bedridden and throwing up, completely unable to function. Life with Cushing’s disease often feels like a roller coaster: There are days when I feel like I don’t have an illness at all, and days when getting out of bed is too strenuous a task. But I can’t get off the ride, no matter how much I want to.
One of the most difficult things I deal with is constantly explaining that my illness isn’t going anywhere. I might be feeling better today, but that doesn’t mean that I’m in the clear and my Cushing’s is gone. It just means that my treatment is working and that for today, and today only, I’m stable.
It can be tiresome to explain this truth and receive sympathetic looks when I need an extra nap or my medicine makes me dizzy.
What I meant was …
When I say “I’m feeling better,” what I mean is “Today is a good day” or even “I’ve had more good days than bad ones lately.” I know I should probably be more honest when people ask, but talking about my medical history gets tiring. Having to tell eight people that my inflammation levels are high, but that at least I’m walking more, sucks. So does explaining that I’m currently increasing the dosage of most of my medications. It makes me feel like my health is all I talk about.
I know my health is important, and people care, but I’d much rather talk about my job, the book I’m working on, or even the movies I’ve watched recently. I just want to gab and eat and enjoy holidays as I did before I got sick.
Needing help
As much as I don’t want people to focus on my illness, it will come up. Recently, I’ve needed a nap every day around 4 p.m. and am having the most intense food aversions. I find myself spitting out food, doubling over, and needing endless sleep. My dream is to be around people who understand my changing behavior but keep their questions to a minimum.
What it comes down to is that I want to be seen as multifaceted. People are complicated and have so much going on. My illness, of course, is a part of me, but it doesn’t define me. It’s not the only thing in my life, and it’s not all that I am.
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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