Dealing With Guilt
Having cystic fibrosis means dealing with hard concepts and lots of emotions. Feeling sick, scared, angry, hurt, sad, grieving those we lost, and so much more. One of the hardest emotions that I deal with is guilt. Guilt pops up in many ways throughout my life with cystic fibrosis. First, there is survivor’s guilt.
Seeing friends pass away, as I continue to grow older, hitting new life milestones, is hard. I struggle knowing I’m on Trikafta, a medication that could have changed my friends’ lives if only they had a chance to try it. One of my best friends passed away just months before Orkambi came to market. Her CF mutations would have made Orkambi, Symdeko, and Trikafta options for her.
I try not to say, “What if?” I often wonder if maybe she could have gotten to a stable level of health or could have held out for that transplant if those medications were on the market when she was struggling. I try not to let guilt overwhelm me, because I know all of them would still be cheering me on (and I believe are). Just as if the situation was reversed, I wouldn’t want any of my friends to feel guilty and I would want them to stay as healthy as possible. That feeling of, “Why am I still here and they are not?” creeps into my mind and it can be tough to think about.
I also have guilt that I’m not doing enough because of my cystic fibrosis. I see quotes like, “If all I did today was breathe, that’s okay,” and I think, "Yeah, but…" But I need to contribute more to society. This is silly because I know that I do a lot. I’m a foster parent, I work part-time, and I volunteer every chance I get.
If, medically, I could handle full-time work, I’d love to jump back into real estate. For the last 6 months, I have been working from home doing freelance blogging and social media management. My hours are flexible; I don’t have to work when I'm sick, which is a blessing. However, having a couple weeks go by without a paycheck makes me feel guilty that I’m not providing (even when I’m sick).
I’m a foster parent and spend most of my time with my kid(s). I know I’m a great mom, but sometimes I think, “Man, I bet my kid(s) would love for me to run and play with them like other parents can.” I feel guilty that sometimes I’m not doing enough as a parent for my kid(s) (kids who need extra support and love). But ultimately, I remind myself my kid(s) want a parent that loves them - it doesn’t matter whether they get to play soccer with me. I find other ways to have fun, like play board games and baking. Feeling guilty that I’m not doing enough work and parenting is something I do struggle with often.
My biggest challenge with guilt is feeling like my cystic fibrosis complicates the lives of those I love. As a teenager, I saw my parents give everything they had to my sister and me. Dad worked two jobs, one from 6 A.M. to 3 P.M. and one from 4 P.M. to 10 P.M. Mom worked around the clock helping me with meds and caring for my sister and I. I knew my parents didn’t have a lot of money when I was a teenager, but I didn’t realize until I was an adult that it was due to my medical debt.
Even now, I still see ways my cystic fibrosis impacts them, and I experience guilt. My father is still working in a factory even though it is affecting his health, a job he had plans to leave 35 years ago. After I was born, he couldn’t switch jobs due to health insurance. I didn’t know any of this as a kid and my parents never discussed their hardships. However, as an adult, I can now see how my CF impacted them. I know they don’t mind because they love me and would never want a different life. But I still know how hard it must have been on my parents and sister, especially now that I’m a parent. I can’t imagine how they felt watching me go through all those hospitalizations and surgeries, how scary it must have been for them.
I work as hard as I can so my husband, Andrew, doesn’t have to compromise his career or dreams. Even so, he takes on extra work that I wish I could do. Shoveling the sidewalk, carrying laundry up from the basement, and carrying our kid in public when he gets tired - these little tasks add up. When I’m home on IVs I can handle quite a bit, but when I’m hospitalized, he becomes a single parent practically. Thankfully, that isn’t too often. Still, I see all the extra ways he helps and sometimes I feel guilty that I can’t do more.
Dealing with cystic fibrosis and guilt
Guilt is the most difficult emotion I deal with. However, I won’t let it get in the way of my loving life. I won’t let it overwhelm me or take over my thoughts. I always remind myself of the good, love, and happiness that my family brings to me and I to them. I know I would do anything for them and know they feel the same.
I’m thankful they are always there to help me. Looking at my life, I’m very lucky to have the support I do. Their support has helped me through many hard times full of emotion. I know how to deal with my guilt and other emotions, but it can be hard.
I think it’s important to acknowledge feelings. This is one reason mental health for the CF population is so important and becoming a bigger topic as we are aging. I talk to my social worker at my CF clinic and I think that is great place to begin. They can help you sort through those feelings and emotions. Finding support and asking for help when needed is super important to not only my physical health, but my mental health. I’m thankful for everyone I have in my life that I know are willing to help me.
What emotions do you deal with regularly and which are the hardest to deal with? Share in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?