Cushing’s disease entails a seemingly never-ending list of issues, and some don’t ever diminish, even after surgery. Some people have surgery, heal, recover, and move on with life, never having to look back at sick days ever again. Meanwhile, others go through recovery but deal with chronic issues the rest of our lives.
One thing no one ever really seems to talk about is the post-traumatic stress disorder (PTSD) that so many people with Cushing’s suffer from after they’ve had surgery. I believe most people don’t talk about it because no one ever really associates PTSD with medical conditions. We can feel ashamed to say we have PTSD from Cushing’s while there are people out there with PTSD from warfare or car accidents and so on.
People we interact with assume that because we had surgery and are on the way to getting better, the experience is behind us, and it is a thing of the past we never have to worry about. The same can happen to people with other illnesses, too. We cannot diminish our feelings just because it seems more socially acceptable to label PTSD sufferers as those who, for example, went to war or were attacked by someone.
Cushing’s is traumatizing. It changes how you look, feel, think, and function. It changes you entirely. For instance, Cushing’s can cause such inexplicable and crazy bodily attacks in some people that sometimes you can’t bear to go back to where the attack happened in fear that it’ll spark more panic attacks because you’re scared it’ll happen again.
Today, April 27, 2018, marks 15 months since I had surgery, and I am here to tell you, I do suffer from PTSD from Cushing’s. My anxiety is the highest it’s ever been. I can’t go to sleep at night without worrying I’ll die because Cushing’s is so mysterious that I worry something that wasn’t found in my body is going to be my cause of death. I feel very hopeless about my future because currently, I’m still not working. I’m still living day by day because everything is so different. I just turned 25 and I feel like I’m doing nothing with my life and I’m getting judged for it. I feel detached from so many in my life. I don’t feel like I can connect with people like I once used to. All the things I used to enjoy? I enjoy them here and there, but nothing really brings true joy. I’m also constantly worried about the disease coming back.
Those are just a few examples of what I go through that are in line with suffering from PTSD. I know that to most people, I seem cheery, hopeful, and excited about life — and I am sometimes! I’m not 100 percent always down. But the negative feelings do take up more space than the positive ones, and the only thing I can do is work hard to find things that make me happy. Some days, my brain just won’t allow my positive thoughts to win, and that’s OK.
If you suspect you’re suffering from PTSD, don’t be afraid to confide in a loved one, a friend, or even someone online who has endured what you have. Don’t be afraid to go to your doctor to ask for help. Don’t be afraid to reach out to a counselor. Don’t be afraid to find a support group. Taking steps to seek help and expressing that you feel these things is the toughest part. Once you’re at an appointment or support group, or once you’ve expressed the words, “I think I suffer from PTSD, and I need your help,” you’ve gone through the hardest part. The rest is just allowing yourself to be vulnerable and getting support.
Your mental health during all of this is just as important as the physical parts of the disease. Please, please, please don’t forget that. You’re not a burden, you’re not wrong, you’re also not overreacting. You’re also not alone in this. Many more people are suffering than you would believe.
Until next week,
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 Services, and are intended to spark discussion about issues pertaining to Cushing’s disease.