The challenges of having an illness that’s both visible and invisible

Cushing’s disease can look different from one person to the next. One may use a wheelchair, while another is in remission. Someone might be on 50 medications, and another person might need only one. Therefore, simply saying I have Cushing’s disease doesn’t really explain how it affects my body.

For many, Cushing’s disease is an invisible illness — one you cannot immediately see just by looking at them. Some days, this fits me. I am an ambulatory mobility aid user, so on a good day, you might not be able to tell I’m sick. However, just because I don’t “look sick” doesn’t mean that my body isn’t showing signs of illness.

Recommended Reading

July 19, 2022 Columns by Brandy Moody

Both Visible and Invisible Scars Come With Cushing’s Disease

What makes me invisible

I don’t love the term “invisible illness” because I think it stems from an able-bodied perspective. Who decides what sick looks like? My body has a permanent buffalo hump, scars, bruises, skin issues, and more. I often wear braces on my legs and arms, carry medication in my pocket, and have treatments applied to my skin.

When I look in the mirror, I see my illness braided into my body. It’s a huge part of who I am. Therefore, it’s very strange to me that others may perceive me as healthy and well.

I recognize that, in some cases, it is a privilege not to be seen as sick. Too often, people with disabilities and chronic illnesses are ostracized and looked down upon, despite their numerous contributions to society and basic right to exist safely. On the other hand, when people don’t realize I’m sick, they expect me to act healthy. So, when I have to leave an event early, stop walking, take a break, rely on my medicine, or use my mobility aids, people act like I’ve given up.

This is followed by endless justifications. No, I can’t stop using my wheelchair altogether because my muscles have atrophied and I have osteoporosis. Yes, I do need to take seven breaks on this walk. I have been walking more this week, but that doesn’t mean I can navigate multiple inclines without my cane. Actually, I really do need to rest.

Living in between

Living somewhere between visibility and invisibility can feel like the worst of both worlds. There is an expectation for me to “bounce back” — until I use my wheelchair, and then strangers stop me on the street to tell me how brave I am for using it. People understand colds and fevers more than they understand disease-related fatigue.

Many seem to think I’m dramatic when my illness is visible, and when it’s not, they think I’m all better. I wish there were a more nuanced view of chronic illness, and that those of us living with one weren’t separated into so many boxes.

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.