On July 25th I did a 5K called Whitney's Run and I even shaved off 2 minutes from the 5k I did on July 2nd. I' was a little sore for a few days, but it was well worth it. It was for a great cause. All the proceeds went to a local Center that provides programs & help for suicide prevention programs. I thought this would be the perfect time to open op about how CF has impacted my emotional and mental health. You may not know this BUT mental health is one of the biggest issues CF patients deal with on a daily basis. In fact, the Cystic Fibrosis Foundation has really been focusing on these issues in the past 2 years. If you go to a CF care center (affiliated with the CF Foundation, which most are...) you take an assessment test to see how you deal with all the emotions CF throws at you. I was assessed in May (when I switched to my new CF center).
As I knew the results would reveal, I did scored high. I knew I would. I answered truthfully to all the questions, even though I knew it would not have the best score. CF Clinics have a social worker for a reason. They are there for us to utilize and help us deal with whatever issues we have. Mostly I struggled with fear of loss.
Having Cystic Fibrosis can be very stressful, even depressing at times. It can make you re-think a lot about your life and affect lots of decisions. I don't struggle a ton with depression, I have more anxiety due to CF. Overall, I love my life and I’m very blessed. Which is why I don’t get sad or feel bad that I have CF. I have a wonderful husband, a nice house, a great family (and extended family), and super supportive friends and community. However, that doesn't mean I don't struggle mentally or emotionally with my CF at all. I do. I am always worrying (it’s always in the back of my mind). I worry about normal things like making sure I get all my bills paid, balancing work, CF, housework, etc. But, on top of that I freak out about losing people. Death has really impacted in me. You see, it feels like every other month we lose a friend to CF and growing up I lost a friend almost every single year since age 10.. It's a very real aspect of the disease for me. So, I struggle a lot. I don't go to funerals or visitations (unless I really feel I should). Graves and coffins freak me out the most. I try to face my fears, but I still can't put flowers on a grave without freaking out to the point where Andrew sometimes has to coax me along, or put the flowers down for me. The last time I went to Laura’s gave (first time I attempted walking to the grave) I froze bawling my eyes out. I closed my eyes really tight and was too scared to open them, my husband had to carry me to the car (I'm 30 years old). It's embarrassing, but it is the truth. Seeing death as something common that happens randomly (taking friends that were 10-18 years old every single year) makes me terrified of losing those close to me... Family and Friends, I always ask to text me when home, because I seriously get sick with fear if I don't know they are home safe.
I’m trying very hard to work on this and Andrew has helped quite a bit. The other part of death that freaks me out is seeing myself in those coffins. I have never believed I would live past 45-50. To be honest, I know if some new research drugs or medical interventions aren't brought to market soon, I will really have a hard time growing old. You see, I don't respond to IVs anymore, at least I haven't for the last 2 years.
I lose 3-5% per illness/hospitalization, if this keeps up...It means I could be at 28% and transplant range in 3 years (at worst). Terrifying. So this is what basically causes my anxiety. The fear of losing people I love, or worse the fear that they will lose me. I want to grow old with Andrew and have a family of our own, but it is terrifying at the same time.
That being said, I know I can’t live in fear or let it control me (my Psychology Major in College helped me learn ways to cope too). Andrew and I are very open about my fears and while I want to be realistic about my health. I also have to always have faith and hope. I believe in my heart new medications will keep coming to market and I will have a chance to grow old with Andrew and have a family. I try to focus on the positive. Too be honest, I do not regret having Cystic Fibrosis. While it is a very difficult and time consuming disease, it has also taught me a lot over the years. But, I have to be honest with myself and realize CF affects not just my physical health. I will continue to work on this aspect and fight my fears. I do this by taking/ doing all my meds, keeping active in the CF community, exercising (doing 5ks) to keep my lungs working hard!
I wanted to share, because I know most people don’t want to admit their weaknesses, but it is important. We can never surpass them until we understand them, which one reason why I think a social worker’s role (at CF Clinics especially) is so crucial to the CF Centers. Don’t be afraid to talk about it!