Cushing's Messes with Your Mind!

Recently I was talking to a friend from the Cushing's boards (http://www.cushings-help.com/) and we were discussing how people without Cushing's don't understand what we are going through. Even the wonderful (but rare) doctors who help us don't seem to understand that we need to feel better as quickly as possible. Cushing's messes with your body, and everyone can see that. But more than that, Cushing's often messes with your mind in ways that you can't feel comfortable discussing with other people.

If your loved ones are not particularly supportive, then you might be accused of being a hypochondriac. Friends may tell you that you are just starting menopause and they know so-and-so, and she gained 100 pounds when she went through menopause. You will hear that you need to stop thinking about it, think positive, don't go on the internet because you are just making things worse. Take some herbs, go for a walk, get a hobby! None of these things help one iota in making us feel better.

My family was supportive. (My husband achieved sainthood in my eyes during this ordeal.) My friends tried to be supportive, but sometimes looked at me like I was a crazy wench speaking an unknown language. My one sister kept giving me diet advice and telling me nothing was wrong with me at first, but she got over that once I got some high test results and a visible tumor on MRI. Both my sisters were terribly worried about me and called me often to check on me....did I get any tests back?...were they high?....why don't they DO something to help you?! I have to admit that as much as I love my sisters, I often didn't answer my phone to go through all of that again. It was terribly stressful waiting to get those test results back and I just didn't want to talk to anyone. At work, I took an obscure route to my work area, kept my head down and worked, then took the same route out of the building once I was pretty sure everyone else had gone for the day. It was awful to be walking around in this body, sick and unrecognizable, and on top of all of that there was shame. I felt very ashamed of the way I looked. My mental state was not good. If it were not for the other Cushing's patients I got to know through the boards, I really don't think I would have gotten through it. They were the only ones who really understood what it was like, the only ones I knew didn't think I was a psych case.

Shortly before I finally got to surgery, I began to think of a gun my husband and I own for protection. I would see myself going to get this gun. I couldn't get it out of my mind for a few weeks. I never pictured myself shooting myself, but I did feel it was dangerous for me to have that gun around. I kept thinking I need to tell DH to hide the gun from me. I finally spoke to another friend who was suffering with Cushing's and she said "Mary, if you were going to do it, you wouldn't use a gun. I have enough drugs to kill an elephant here at my house and I imagine you do, too." And she was right, of course! I had plenty of drugs and never thought about taking all of them. Eventually I was able to put the gun out of my mind.

I'm telling you, Cushing's messes with your mind. Some are affected more mentally than physically, but I believe all are affected mentally to some degree. The moment I came out from under anesthesia after surgery, I felt that a black cloud had been lifted and the sun was shining again. What a relief! That is not to say my entire recovery was sunshine and rainbows, but it was still so much better than being sick and depressed and apathetic constantly. I felt normal again!

I wish doctors would 'get' this disease. I wish they would realize that they are contributing to our depression by disbelieving us and not helping us when we are so obviously sick. To be so weak and fatigued that you can barely brush your hair, and then to have a doctor telling you that you should be lifting weights....right after you've told him you can barely brush your hair....well, it is frustrating at the very least.

I still owe that doctor a letter.