From the U.S.: I am currently in a stressful time in my life. I have cystic fibrosis and am on the lung transplant list — been listed since April. I have had ups and downs of stress my entire life dealing with the disease, but this of course, is a new phase. A few weeks ago I started thinking, “What if I could never stop thinking about one thought?” It was one of those silly circular thoughts that I feel like most people have throughout their life at one time or another … and as soon as they are distracted they of course forget and go on with their life. I was on the couch watching TV when I thought of it, and my boyfriend was asleep, so no one to talk to. It’s like my brain latched on, and I started panicking, that I was going to be focusing on this one thought — which isn’t even a thought! It is just worrying about the exact thing that i am doing — and felt I couldn’t stop.
I started wondering if I was going crazy, and just feeling really upset that I was kind of driving myself into some kind of mental illness. I read things online about OCD, and just felt more panicked because the last thing I want or need is another problem that I have to “spend a lot of time and effort” to work on.
In the past three weeks I’ve shared this issue with my mom, boyfriend, and one friend. All were sympathetic and advised me to relax. When I do relax, and mostly when I am distracted by contact with other people, or when I go out somewhere, I can tend to forget about it for a while. But it always returns. It has made solitary times of reflection that I used to enjoy difficult, like listening to music, or driving, because I instead tend to just think about it and my brain goes in circles, trying to think about other things, and then just returning to “but what if I can’t stop thinking about this.” The thing that is hard to relate is that “THIS” isn’t anything, except I guess just a panic that I am going in circles and going crazy, around nothing.
I know this is an exceptionally hard time — I am very sick and my activity is so limited. My mom had to move in with me to help out, it is just so depressing and monotonous. I want to talk to someone sometimes, but I also feel worried about being “diagnosed” with some kind of problem, and also the thought of sitting in some room just talking about my depressing situation right now saps me of energy.
I am very proactive in my cystic fibrosis care. I know every detail of the illness and of my specific problems — and I do tend to be anxious around that. I am not someone, say, who just sits back and does whatever the doctors say without asking why. I am very involved and considered one of their best patients, and I enjoy being so knowledgable and in control of my own care. This is very difficult for me right now because I feel like I can’t think my way out of this problem — this circular thought — since thinking is the problem itself. I have an ativan prescription for anxiety but I don’t like how it makes me feel — depressed and irritable. And I want to stay away from drugs.
I guess what do I want to hear? That this is normal. That this is a time of high stress, and that this thought will go away, when I am more active and back in REAL life, healthy. But instead I sit here and picture myself, post-transplant, still unable to escape this thought, for the rest of my life, like some weird backwards fairy-tale. I think this might be some kind of OCD thing. I have some slight compulsions, like the way everything needs to be before I go to sleep, but nothing really new and nothing has ever gotten out of control. thanks so much.
The problem with trying to think about not thinking about something is that, by definition, you are thinking about it. If I told you you should never, ever think about a purple elephant, chances are it would be very difficult to get the image out of your mind.
My best guess about your current situation is that you are more anxious about being on the transplant list than you realize. You have made every effort to be knowledgable about your disease and what it takes to manage it. Transplants offer hope for extending your life but the surgery is scary and the outcome isn’t guaranteed.
If you weren’t anxious about it, I’d be more worried about you. The anxiety is absolutely normal. You stumbled on a way to push your anxiety about your health aside by substituting worry about your thoughts.
If you were seeing me, I’d want to explore a gentle way for you to express what being on the list means to you. Waiting is hard on people. Often people don’t really know if they want their number to come up or not. There are risks in having the surgery. And it’s life threatening not to have it. Yes, you know all about your disease, I know. What I don’t know is if you’ve let yourself feel and process your current situation. At 31, you’ve already outlived many people who have the disease. So far good treatment and your efforts have certainly paid off. I have every reason to believe that the transplant will be successful, too.
I wish you well.
Dr. Marie
