This week’s post is a little more on the heavy side. On Easter Sunday, we lost another Cushie. This amazing woman had just released a book in December, had a launch party, and was absolutely glowing. She was fighting back after having had her life taken away. Those who knew her thought she was going places.
Until recently, little did we know that she was struggling heavily with random attacks her body was having. She was confused, scared, and lonely. She was waiting for MRIs and tests, but the attacks got so intense that she took her own life. This is something that no one really takes the time to fully discuss, post-operation. Our mental health. We all know recovery and remission is a very difficult course, but we don’t really discuss the impact it has on our mental health.
So, in honor of this amazing woman and all other Cushies who are suffering or lost their battle with depression, panic attacks, and post-traumatic stress disorder (PTSD), I dedicate this post to all of them and all of us.
I can’t really speak for other people’s experiences, but I was told the anxiety and depression I’ve had since I was 12 would likely get better post-tumor removal. That wasn’t my case. I have actually gotten a lot worse. Why? Not fully sure, but I know that’s the case with a lot of us. It may be the anxiety of the sickness coming back, our hormones finding their way back to normal, our body coping with levels it should’ve always had, and so forth. It may also be the PTSD we develop from not having any control of our bodies and our fear that the tumor will come back and that there will be nothing we can do to stop it.
My biggest piece of advice is to seek professional help. I know it is so difficult to do that without insurance or money, but if you dig deep enough, you can find resources that are free or that offer services on a sliding scale, meaning they will charge you what you can afford. I also know the thought of discussing your fears with someone you don’t know is stopped by past experiences of being shut down for your emotions or by being knocked down by many in your personal life. But don’t let those things stop you. If anything, it’s probably better to get help this way and discuss what is going on, because these professionals are not supposed to judge you. They’re supposed to be honest and open about their analyses and questions to help guide you.
Therapists are available that specialize in patients who went through traumatizing events or medical scares like cancer, chronic illness, etc. I would suggest looking for one of these specialized therapists and going to them if you can. Remember, not every therapist will suit your needs. If you don’t feel a therapist would be helpful to you, move around until you find the right one. Having the right therapist is key to your recovery and how successful the therapy is.
Hospitals are also another great place for counseling. These are usually free (at least in Canada), with a referral note from a doctor. The downside is, sometimes the wait is ridiculous. I’m not sure what other countries are like, but it is worth researching what programs your local hospitals have for counseling. They usually have information on their websites and if not, call the department and ask. Sometimes they offer services not listed on the website.
Going through Cushing’s and remission/recovery with the scare of a reoccurrence is normal. You’re not “crazy,” “insane,” “overthinking,” or “dramatic.” Don’t let anyone who hasn’t gone through this tell you what you are and aren’t allowed to feel. They have absolutely no idea the hell on earth it is to have Cushing’s and what type of strength it takes to physically and mentally live with it, and try to recover from it, post-operation. The complexity of this disease is unbelievable, no case is the same, and some are absolutely horrifying without chance of recovery.
It’s normal that we all feel so alone in this battle, but you don’t have to be. Please seek out help if you need it and always remember there are a lot of us out there. Just look out for us, and we’ll all be here for you.
Hang in there and see you all 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.