I’ve been putting off writing this article for several reasons. One of them is the fact that I’ve been, quite frankly, depressed. Another reason is that I don’t know if I feel comfortable fully blaming Trikafta for my mental health issues. The truth is, I was mentally ill long before Trikafta. While I do believe the modulator exacerbated some of my issues, I also believe that I was going to have a “breakdown” at some point anyway. The final reason is that it’s pretty scary to put yourself out there for the whole world to see, especially about a topic as vulnerable as mental health.

I started Trikafta in January 2021. During the summer later that year, I had my first manic episode. I stopped sleeping, started being more talkative, and showed other signs that come with mania. I honestly don’t know if I feel comfortable going into the specific details. Since then, I’ve attended multiple intensive outpatient programs, been hospitalized for psychiatric reasons, and had countless other episodes. 

I was diagnosed with bipolar disorder that same summer. As I came to terms with this new reality, I heard countless stories of people struggling with mental health after starting Trikafta. My family began to investigate it, and it seemed like there was a good chance that this was what I was experiencing.

I’m going to be honest — because I am good at many things, but lying is not one of them — I truly do believe that Trikafta hurt my mental health, but I don’t think it was the cause of my illness. I’ve struggled with mental health nearly all my life — and while I do believe Trikafta accelerated the process, I don’t think it “made me” mentally ill. I wish that I could point at one thing (like this specific medicine) and say, “There. That’s what made me mentally ill.” But the truth is, I can’t. It would all be easier if we could blame one thing, wouldn’t it?

Regardless, I told myself I wouldn’t let this post get too depressing, so I’d like to share about the support I’ve found within the CF community. As I’ve gotten older, the loneliness of CF has started to weigh down on me, so I’ve found support in online communities for CFers. I recently attended a Zoom call for adults with cystic fibrosis where we talked about Trikafta and mental health. For the first time, I felt seen. I saw myself in the experiences of others, and it was incredibly validating.

It’s hard to be hopeful and positive sometimes. At the time I’m writing this, I’ve been struggling a lot lately to the point where it’s hard to see a light at the end of the tunnel.

Despite that, I know there is hope. I recently started Alyftrek, a new modulator that may not have the mental health side effects Trikafta has had on me. I’m also starting a new form of therapy (dialectical behavioral therapy, or DBT). I like to believe that there is hope, that things will get better, and most importantly, that there’s a community who will resonate with my story. 

Interested in sharing your story? The CF Community Blog wants to hear from you.