Mistakes I Made in the War for My Mind
I fought cystic fibrosis for 15 years before the overwhelming burden collapsed. My family was driving to get dinner when my brain and heart suddenly exploded. I was sobbing and gasping for breath, able to hear every rapid pound of my heart against my ribs. I couldn’t think, yet I was thinking too much — my brain overloaded. My parents and sister asked me what was wrong and an unintelligible language gushed out from my mouth. The message was clear, though: Get me to the ER.
Some relaxed hours later, I told doctors I thought it was a heart attack. After a series of tests, they concluded I experienced a panic attack — my first-ever, and the first of hundreds.
You know how in sci-fi movies everything gets sucked into the void of space if there’s a hole in the spaceship? Panic attacks are the hole, and depression is the void. My emotions kicked into overdrive and then evaporated, leaving me hollow. My emotions entered a cycle: the revolving door of anxiety and depression, feeling too much, then feeling too little.
Cystic fibrosis patients are two to three times more likely to experience anxiety or depression. I was told many times before, “Mental illness comes with the disease.” That might be true, but the phrasing belittled the problem for me. It seemed like depression and anxiety were mere side effects I had to “get used to” rather than serious issues requiring professional help. I made serious mistakes throughout my war against the hijackers of my mind.
I wish I had done things differently
• I wish I had seen a psychologist before the symptoms occurred. If I already knew a therapist, it’s possible they could have seen early warning signs and prevented my anxiety and depression from going unchecked. Instead, I suffered for months without help.
When I finally sought help, my therapist only knew me in my crises, which led to mischaracterization and inaccurate benchmarks for my behaviors. They could have treated me more effectively if they knew what “Normal Brad” was like compared to “Anxious and Depressed Brad.”
• I wish I knew that therapy needs to be comfortable. I stuck with my first therapist for about a year. She was a kind person, but I couldn’t open up to her. There just wasn’t a connection. A therapy relationship — while technically a professional relationship — is personal. You need to trust them.
I ended up trying a different therapist simply because they were closer to where I lived. I’m so glad I did. We have a connection that lasts to this day, despite me moving away. I shouldn’t have continued seeing the same person before if I didn’t think I was reaching full potential in my therapy sessions.
• I wish I was honest about my medication. The first time I took medicine for my depression, my psychiatrist said it could take a few weeks to begin working. I waited several months to feel a difference that never came. When my psychiatrist asked how my medicine was going, I would respond with an unhelpful, “Good.” The idea of telling the truth made me anxious for some reason. (Is anxiety ever rational?)
My depression got terrible enough that I confessed the medicine didn’t work. He easily switched me to something new that helped fairly quickly. I could have halted my depression before it got unmanageable if I had just given honest feedback.
• I wish I joined CF support groups sooner. I used to avoid support groups because I hated to see patients in really terrible conditions and imagine my “inevitable” future. I finally joined online groups during college when I became desperate for tips for fighting the disease. CF is an incredibly isolating disease. The frustration of “normal people” not understanding my struggles is depressing in itself. Chatting with patients who empathize is one of the best therapies. Sometimes we just need a good vent.
Many patients say they have enough appointments and medications without worrying about mental health. It’s important to consider the effect mental illness has on your physical well-being, though.
Studies of CF patients and humans in general show an intertwined relationship between mind and body health. Lack of motivation can be as dangerous as bacteria when it comes to a high-maintenance disease like CF.
If keeping high spirits keeps you healthy, you could reduce your number of appointments and medications in the long run. CF already attacks your lungs. Don’t let it get away with attacking your mind.
Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Thank you for sharing your own personal experience Brad. Perhaps the lessons you learned the hard way - others may now, through your suggestions here, find an easier and more direct way.