I’m Still Dealing With the Aftermath of Cushing’s Disease

Most people I talk to who have Cushing’s disease describe their experience with it as the worst time of their life. But I actually had the most trouble with my physical and mental health after my struggle with Cushing’s disease.

I have seen many of my “Cushy” friends return to a normal, happy life, and while I am grateful I no longer have Cushing’s disease, I also have dealt with a lot of pain since then. I wrote about some of the struggles I had during Cushing’s disease, before treatment, in a previous column. This column will focus more on my hardships after recovery from treatment.

The amount of damage the hormone cortisol caused my body has left me with ongoing issues in my bones and joints. I am injured pretty easily, and it still takes a while to heal. I scar easily and have a lot of joint pain from activities that shouldn’t cause prolonged injury.

I always joke with friends that at 28, I have the body of an 80-year-old. I can bend over to pick something up and throw out my back for days. Or I might have a minor fall while roller-skating and still have pain while walking a month later.

While this isn’t fun, the worst thing I still deal with is anxiety. After having Cushing’s disease, my anxiety has spiked dramatically. Before being treated, I felt as if I were in a fog, and every day was a haze. While I struggled to get up in the morning and throughout the day, my feelings were somewhat neutral regarding anxiety. The fog seemed to numb it.

Kat during one of her recent hospitalizations due to anxiety attacks. (Courtesy of Kat Rees)

After having surgery to remove a tumor from my adrenal glands, everything in life seemed brighter and more vibrant, as if the fog had been lifted from everything I was feeling. Everything I felt was more intense — my happiness seemed happier, and my sadness seemed sadder.

My anxiety became a lot scarier. I started experiencing panic attacks at least three times a day, and they were by far the most frightening experiences of my life. My anxiety got so bad that I had trouble eating and lost a significant amount of weight.

I had to be hospitalized three times due to anxiety. I went to the emergency room 24 times by ambulance in three months because the panic attacks were so vivid I thought that I would die. The things cortisol can do to the mind are unbelievable. It nearly killed me.

After receiving a lot of therapy, my anxiety is much better. I still deal with it, but it’s not nearly as bad as it was. I can go a day or two without having major anxiety attacks, and I’m grateful I have more good days than bad ones now.

While I don’t regret having Cushing’s disease, I do wish I had been more prepared for what came after treatment, as perhaps I could have started working on my mental health before it took such a downturn. Nevertheless, I am still very grateful to be alive.

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