Where Mind and Body Meet - My Mental Health and CF
Last updated: August 2022
When discussing cystic fibrosis (CF), people are overwhelmed to discover how many areas it affects in the body. Lungs, digestive system, pancreas, bones, reproductive system and so on. What always happens to be left out is the mind. I remember as a child I would ask my doctor, what about my brain? “Is my brain going to be affected by CF?” At the time, I didn’t know what mental health was nor did I hear anything about it.
How I knew I was struggling
I mentioned a few times to my friends or adults that I wasn’t feeling good, but I didn’t know how to elaborate that those feelings weren’t just feelings. They stuck around for years. I asked my friend in elementary school if she had them too, and she proceeded to tell me about something called mood swings. She drew a picture on the chalkboard of stick figures on a swing set and explained that when you swing forward you’re happy, and when you swing backward you’re sad; and so goes the cycle. This made sense to me because I had experienced happiness and sadness, but there was so much left out in that explanation. It was too simple to describe what was happening in my brain.
When I thought about doing my treatments or going to the hospital, I felt depressed. When I did blood tests and x-rays I felt anxious. Supposedly this was normal, but if it was so normal, why was it taboo to discuss? I received care from a support person in the hospital who gave me a doll to poke with a needle so I could be prepared for sharps. She also let me flip through magazines and analyze the best dressed and worst dressed lists of red carpets. This served as a distraction from medical treatments for a while. But the thoughts of fear and sadness lingered for weeks after.
I developed symptoms of fainting, vomiting and anxious tics to cope with the experiences that made me shudder. I lost enjoyment in activities I once loved and isolated myself from friends because it was just too much for myself to handle. I avoided showers, brushing my teeth, getting dressed and eating because everything I did felt like a marathon. I sat alone in my bedroom for hours staring at the ceiling wondering why I couldn’t be happy when I had so many reasons to be.
The truth is, my depression and anxiety held a gray cloud over my head for 21 years and the more I ignored it the larger and darker that cloud became. When I finally decided to address my mental health I discovered that I was living with depression and anxiety. I felt that this was good news because to have an explanation for why I felt the way I did for so long was a relief.
Additionally, to find that there were other people in the CF community and the world that were going through the same thing was comforting. The best part of the online CF community is that I never feel alone. What I didn’t know was that taking care of my mental illnesses were equally as exhausting as just living through my mental illness. But dealing with them made life more manageable in the long run.
Medications, therapy and doctors appointments; these were not foreign concepts for a CF patient. But to go from caregiving for one illness to another was a balancing act that no one could have prepared me for. Especially when they are so intertwined that I can’t adjust one, without disturbing the other.
That’s where I found out talking really does help. It sounded stupid to me when I was younger, but once I started talking, sharing and figuring out that the way I thought was partially a result of a chemical imbalance, everything felt more manageable. Talking to people who understand or who will make an effort to understand made all the difference.
I hear a lot of people say I have no reason to feel the way I do because other people have it worse. The truth is, there’s always going to be someone to compare yourself to, but you just can’t let yourself do it. You’re in your own body and that’s all you’ll ever know.
So let yourself feel sad if you feel sad. Let yourself feel nervous if you feel nervous. But I couldn’t let it linger to the point that it affected my whole life. Taking the reins of my mental health has turned my life around drastically in the past few years. Finding coping mechanisms for CF has helped tremendously as well. The best tactic we’ve got is each other, so let’s change the way we talk about mental health for good. Open, honest and truthful.
Have you participated in clinical or market research before?