Cushing’s is a pretty brutal way of coming face-to-face with your vanity.
Cushing’s syndrome is what happens if your body is exposed to excess cortisol. You can get Cushing’s by taking glucocorticoid medications (like Prednisone) for an extended period of time. Or you can get Cushing’s from a tumor. Tumors on the adrenal gland produce cortisol directly. Other tumors, either pituitary tumors (Cushing’s disease) or tumors in other locations such as the lung (ectopic Cushing’s) tend to produce the pituitary hormone ACTH which in turn stimulates the adrenal gland to produce excess cortisol.
If you google Cushing’s, invariably you will come across a picture something like this:
This picture gives you a pretty good idea of what Cushing’s does to the human body on a superficial level. You gain a lot of weight, typically in your midsection. You get a “moon face” which means your face gets really round and puffy. And you get a lump of fat at the base of your neck, often called a “buffalo hump” because, well, it looks the humps buffalos have on their backs
Cushing’s also often causes people to break out in cystic acne and very often to get straie – dark red or purple stretch marks – on the abdomen, hips and other locations. Your skin gets really thin and you often lose hair on top of your head too. Not all patients experience all of these changes in their bodies but most people experience at least some of them.
The above picture gives you a good idea of what Cushing’s does to your appearance. What this picture doesn’t show is how these changes affect patients emotionally. As you start to get sick, the body you have been living in since birth begins to transform before your very eyes. At some point, you look in the mirror and you know longer recognize the person staring back at you. You don’t feel like yourself and now you don’t look like yourself either.
It might seem that the last thing you should be thinking about when living through a serious illness is your appearance. But Cushing’s made me acutely aware of how central my appearance is to my identity.  I used to be thin. Now I am overweight. I used to have thick, lustrous hair. Now, my hairline is receding. I used to wear size 2 dresses to work everyday. Now I wear maternity clothes as it is the only thing that comfortably fits over my belly.  When I was healthy, I felt confident about my appearance and never considered myself to be vain.  Now I obsess about my appearance all the time.
Dear Shannon,
Thank you for your honest post and sharing with the community. It reminds me that our physical health is such a major pillar to our overall health – both mental and emotional. As you have gone through this journey with Cushing’s Syndrome, the metamorphosis has impacted you in this way. And it is not vain to speak about this, but it is important to talk about it.
I feel like our society forgets about those who once were healthy, but our now sick and have changed physically. I believe that by writing about your feelings you are doing everyone a good service -by refusing to forget anyone who has been changed, anyone who has morphed as a result of their rare disorder.
I hope that together the community can remind you that your outer appearance is changing but so is your inner person. And I hope that for every blog post about your outer changes, you can write 2 powerful reflections on the inner spirit and that internal emotional metamorphosis.
You are doing good for many people in the RFRD community every time you share with us. It is a strong legacy, and your eloquent writing style is honest, creative and inspiring.
And that is a beautiful thing.
Love
Stephanie