I’ve never been shy in regards to talking about those whom I have met with cystic fibrosis and the impact they’ve had on my life. I have talked about losing my best friend to CF and how lost I felt even years after his passing.
One thing I neglected severely during this time was myself and my mental well-being. I had grown depressed and I felt lonely daily. No one could truly understand how I felt and I always felt guilty that I was not the first of us to go. I was, in a sense, just waiting to die. I came to accept that thought.
Choosing to attend grief counseling
I finally had to make a choice to seek help because I was not sleeping or being myself anymore. I decided to take my mental health into my own hands and seek therapy. I knew I was not okay and I knew I could not continue on the way that I was. It wasn’t healthy.
I kept remembering each word of my final conversation with my friend. I knew that he would want me to fight and live my life the best that I could for both of us. We promised each other that, if either of us went first, we would live for the other and not let CF hold us back.
CF, grief, and survivor's guilt
In therapy, I held back tears as I talked about my friend. I expressed myself fully because I knew I had to. My therapist shared that many times those of us with severe illnesses feel guilt just for living. We can punish ourselves because we lost loved ones to a disease we have in common. I was feeling guilty for outliving him and I was angry that I did.
I had to learn to be okay that I lived and he didn’t. Many times, we carry so much weight in wondering “why me” about a disease that is extremely unpredictable. As many of us know personally, CF is not a discriminatory disease. We can lose loved ones with cystic fibrosis at any age and, in turn, we hold grief that can lead to guilt and our mental health suffers because of that.
Where cystic fibrosis and grief overlap
I still have a long way to go in accepting his death, but I am glad that I am in the correct road to recovery. I want to live to honor his memory and the memory of those who lost their lives to CF, people whom shaped my desire for CF advocacy and people who have brightened my life just by knowing them.
I don’t want to be afraid of the future because, in reality, CF treatment has come so far. We are living so much longer than before. There truly is a light at the end of the tunnel and I want be there to see it.
I truly hope to be able to become stronger and be braver each day because I know I need to. I still have so much that I want to accomplish in life and more than anything I want to always fight like my friend did and kick CF's butt!
Have you attended grief counseling to help cope with losing a loved one to cystic fibrosis? Share your experience in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?