Depression Is Where I Was Finally Able to Accept CF
I can’t remember the first time I experienced depression, but I know the black dog has been my friend for many years. Being at my most destructive when I was a teenager, that is when I first sought help. I didn’t want CF to exist, I didn’t want to even acknowledge it. Months were spent in denial, only facing the giant green beast when I needed to surrender for IVs. Being a teenager was tough, being a teenager with CF was even tougher.
Reaching out for help
My first shot at therapy was fruitless - I honestly don’t know why. A few more years passed, and I had another go at some counseling. My mental health this time was scarier than before. I felt completely helpless, out of control and my thoughts were beating up my brain at every avenue. Again, counseling didn’t work. I was at my lowest.
Medication didn't help me as much
My doctor suggested I tried medication to lift my mood. Medicating with happy pills didn’t make me happy, they just made me numb. I was determined not to settle here. Another year or so passed and I was eventually forwarded to a psychotherapist with who I was able to build a good working relationship. This time around the focus wasn’t counseling, it was much more structured than that.
What initially helped was realizing I was not alone; CF patients are nearly three times more likely to experience depression or anxiety.1 Furthermore, we have one of the highest treatment burdens of any other life-long chronic condition. It is not a surprise our mental health takes a hit from time to time.
The path of least resistance
Rachel, my therapist, worked with cognitive behavioral therapy methods (CBT) and acceptance and commitment therapy (ACT). CBT looks at thinking patterns and how they affect behavior. Once we worked all that out, the therapy worked on re-wiring my thought patterns which in turn helped change my behaviors. It is clever stuff. ACT is the opposite, it has less of a focus on behavior changes and more of a focus on accepting things as they are.
So, for example, I can use CBT to change how well I manage my CF treatment and I can use ACT to accept that I will always need to do treatment to stay healthy. I spent two years working with Rachel because, quite frankly, I had about 20 years of baggage, denial, and negative coping mechanisms that needed unpacking. Once unpacked, we build my resilience with a well-being toolbox.
Wellbeing toolbox essentials:
- Therapy focusing on CF acceptance
- Mindfulness practice
- Reaching out for help when needed
- Being open with your CF team
- Becoming part of an online community
- Talking to your loved ones about how you are feeling
Reaping the benefits of therapy
Finally, we were getting somewhere and I was off the happy pills. We even managed to regress back into my most traumatic needle phobia memory and desensitize me to it. This meant all those years of stored traumatic memories were replaced with a happy, safe space. I really did start to come on leaps and bounds. By acknowledging CF and finding space for it, it became easier to keep myself fit and healthy.
I had spent decades running away from CF when all I needed to do was stop and run towards it. I have had blips over the years, several of them because CF doesn’t stop throwing up challenges. After building a substantial and sturdy wellbeing toolbox, I now know what to do when those times feel a little too tough.
If you are struggling, reach out to the community or a therapist – the right one will be out there for you too.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?