For the past several months, I’ve been struggling with depression and anxiety. Almost all of my mental health issues can be attributed to my declining physical health. The Cystic Fibrosis (CF) I was diagnosed with at six and a half months of age has always affected me but has been progressively stealing my life for the last two years or so. Most notably, I now wear oxygen 24/7 because I can’t take in enough oxygen on my own. There is still no cure so I have limited options. The most likely scenario is that my lung function will eventually decline to a point where my quality of life is severely affected and I will make the choice to undergo a double lung transplant with the hope that it is successful and I can get a few more years out of my life where I can breathe freely for the first time ever with the help of someone else’s lungs.
As one might guess, having mortality staring you in the face at the age of 23 is a difficult pill to swallow. It’s something my family and I always knew was coming. I have always been a very stubborn overachiever and, as such, have always been quite hard on myself as far as the expectations I have for myself and the way I speak to or treat myself are concerned. With my health now worse than it’s ever been, the pressure to do absolutely everything I can to take care of myself is immense. And I felt like I was cracking under the pressure.
Since the fall of 2015, I have become pretty withdrawn, spending most of my time in the basement TV room. I am often sad, stressed, worrying over multiple scenarios in my head, easily overwhelmed, and anxious. My appetite and sleeping habits have suffered, I’ve stopped exercising, and my motivation to do anything is severely lacking. I talked about my issues with my long distance fiancé constantly, and my parents expressed their concern for my mental health but I couldn’t seem to snap out of it on my own. The only thing I did know, thanks mostly to my fiancé, was that I needed to work on taming my inner critic because it was pretty out of control.
At the beginning of June, I met with a psychiatrist who the adult CF clinic had just brought on board for an hour-long assessment. Unsurprisingly, she believed I was dealing with depression in reaction to an adjustment I was making in my life (adjusting to the new circumstances surrounding my health, needing oxygen 24/7, etc.) and that the anxiety I had always been able to deal with and keep under control was now running amuck. I agreed that this was a fair assessment and we talked about a plan to deal with these issues. The month between this appointment and my next with her was full of anxiety and instances where I would get so anxious or worried or overwhelmed that I would get caught up in my head and have a hard time moving past it or making decisions. I would either end up crying or doing something to distract myself and avoid what was going on. That month was extremely stressful for my fiancé and I, and my parents. However, I did feel like I was making some progress when it came to recognizing when I was beating myself up as I was able to do that more often. I also had an incredibly helpful BodyTalk session that reminded me to listen to my inner guide, not my inner critic or anxieties, and to let myself sleep without feeling guilty or being hard on myself for doing so because my anxiety riddled mind needed the time to recoup.
My second appointment with the psychiatrist came at the beginning of July and was only a half an hour long which I didn’t think was long enough. She mentioned that we needed to do some work on acceptance and I recounted to her my most recent episode of anxiety. She told me about core beliefs and said that the initial or superficial thoughts I seemed to be getting anxious about probably weren’t the real source of the anxiety. Using that episode of anxiety in retrospect, we did an exercise where she taught me to ask myself what this means for me and my future over and over until I can’t get any more answers. My final answer is my core belief and is most likely what is causing the anxiety. We didn’t complete the exercise but the core belief we stopped at was: The CF is winning. This statement upset me of course, but I didn’t realize until later the significance of it. I was sent home with the homework of finding the core belief every time I had an episode of anxiety. I was frustrated after this appointment because I was impatient to figure out what was going on with me and start feeling better mentally and emotionally.
A few days later, my fiancé and I had a conversation about how I needed to make some lifestyle changes that would better serve me and my fear of failure and lack of confidence in making changes that would stick. This conversation was very uncomfortable for me and made me very anxious. I was anxious and frustrated because I agreed that changes needed to be made but I was scared of failing again because I knew that would just lead to my inner critic beating up on me some more. As usual, this conversation ended in tears of frustration, despair, and overwhelm.
The next week, I met with a social worker who specializes in anxiety. I had been meeting with her every few weeks to work on my anxieties around food, something I had developed thanks to the CF when I was very young. This time however, we talked for two hours, and barely touched on the topic of food. I told her about everything that had gone on and we talked about my anxiety, the habits and routines that aren’t serving me, and the way I treat myself. I was surprised that even when I thought I was being neutral toward myself in answering her questions, she pointed out that I was again being hard on myself. She asked if I would have compassion for a friend if they were in my circumstances or if I would speak to them that way. I, of course, said that I would be compassionate toward them and admitted that I do have a lot on my plate. The conversation was good but I still felt frustrated and she could sense that. There was something that I was missing, something that I wasn’t quite understanding about what was going on with myself.
I went home and called my parents that night. I talked to my mom about my idea to come home for a couple of weeks to regroup. I wanted to go walking with her and try to get back into exercising. I also know I eat better at home so I wanted to get back into the routine of cooking meals again. She was supportive and we came up with a plan to get me home and make this happen. Then, I talked to my dad. I filled him in on how the latest psychiatrist appointment had gone and we talked about it. He told me that he and mom had talked about it and also thought that my anxieties were caused by some thoughts going on at a deeper level. He also thought I needed to work on accepting my current circumstances though he conceded that it seemed like I had started to accept things because I had told my doctor that if this new drug I’m going to try doesn’t work, I would like to be listed for transplant. I hung up with my parents and had so many things swirling around in my head. The things the psychiatrist had said and the things the social worker and my dad had said. I was frustrated once again. How do I accept where I am without feeling like I’m giving up?
Early into the morning hours, I was still awake having just gotten into bed, and my fiancé woke up so we started talking via video chat. I told him about what my dad had said about believing that I needed to accept current circumstances. My fiancé agreed with my dad and thought that it would probably help me. I told him I was confused and didn’t know how I could accept things as they are without feeling like I’m giving up or giving in to the disease. He said that I needed to realize that if I accepted things as they are now, that does not mean I failed. The word “failed” hit me like a ton of bricks. I started crying and told him that I’d always had this unrealistic standard or expectation for myself that I would magically beat the disease with pure will and determination or that it would somehow not do to me what it does to everyone else with it. But sadly, those are the realities of a progressive disease that has no cure. I asked my fiancé, who also has CF, how he doesn’t feel like he failed and because he is so very wise for 24, he said that he believes two things help him with that. One, that death is not a finality. Whatever you believe, most people don’t believe death is a finality. And secondly, that because CF throws your mortality in your face from a very young age, you know just how precious life is and that you have to enjoy it and not waste time on things that don’t matter. I cried and lay there listening to him speak and it dawned on me that all the messiness and negativity from the past several months – all the bad habits and feeling down and beating myself up for almost everything – that was my inner critic at its very worst. That was me punishing myself because I saw how poor my health had become and I believed that I had failed. As soon as the thought entered my mind, I knew it was the truth. I told my fiancé what I had just realized and he knew it too. This was the piece that I’d been missing all along. The thing I hadn’t quite understood about what was going on with me. He pointed out that I’d been close when I’d told the psychiatrist that the CF was winning. I just needed to take it one step further; if the CF was winning, then I was losing and therefore, I failed. I started sobbing because the missing piece had clicked into place and as my fiancé talked me through the fact that I hadn’t failed, I immediately felt lighter. It was an incredible, indescribable feeling.
I did not fail. Having Cystic Fibrosis is not a win or lose game. I can’t go on beating myself up when something that I had no control over is happening to me. As sad as it is, this was inevitable. I didn’t fail because I’ve done and will continue to do the best that I can. And, I’ve done some amazing things in my life so far and I don’t plan on stopping. I will no longer punish myself for doing the best I can in the face of a disease that cannot yet be cured. I will, however, enjoy the rest of my life. Because as my wise fiancé said, my life and my health are not the same thing. I don’t have to live a life that is lesser than just because I have poor health. So I will do things that I love and that make me happy. I will go on adventures and make memories. I will be kind to myself. I will enjoy the small things that make life beautiful. I will spend time with the ones I love. I will marry the man I love. I will lead with love. And that – that is how I will win.