CF Patients Have Care to Give

I never really considered myself to be a caregiver, not close in any capacity to how I view myself as a patient. I’ve been comfortable with that identity for a long time while having CF. I am the patient, and I will always be the patient. Until I got older and friends and family started to get diagnosed, or just open up about their illnesses.

So many people have something that they are dealing with health-wise. Whether it’s navigating a special diet to avoid celiac or an allergy. Or it could be suffering from an injury later on in life. Or being diagnosed with a life-threatening illness, there are hundreds of possibilities. This knowledge has made me realize that I can be a caregiver in my own way, benefiting the ones I love. Even though I still require care, there is still room in my life to assume the caring role.

Mutual support

My younger sister also has CF, but growing up, I did not consider how helpful we both were to each other. I was focused on myself, staying healthy, and hoping she would do the same. We were emotional support for each other, but we did not know it at the time. We encouraged each other to take our enzymes, watched movies together when we had surgery, and did our treatments together every day. It was the mutual benefit that made me blind to the fact that, while I was sick, I was really doing something helpful for another person who was sick, and vice versa.

Reversing the role

Growing up, my mother had a chronic illness as well, but she kept the focus on my sister and me. She was our caregiver since we were born. She was a stay-at-home mom to ensure we would stay healthy for as long as possible until a cure or control came. I owe her; without her care, I wouldn’t be as healthy as I am today. I would have lost my mind and my persistence to stick with treatment. When my sister and I got Trikafta, everything changed. We no longer needed someone to take us to appointments, mix our inhaled medications, pat our backs for physiotherapy, talk to our CF team, cook for us, vouch for us, or do anything related to our illness. For us, Trikafta meant independence, which was scary. I love having my mom around to take care of me; there’s nothing else like it.

But with our poor luck, our mother was diagnosed with cancer shortly after. This was the most painful event of my life. Everything in our lives is reversed. I was now experiencing everything my parents likely experienced watching their two children suffer from CF. I spend my nights awake worrying about her condition worsening, wondering if she feels sad, and hoping that she gets better. I spend our time together wanting to do everything for her, cook, clean, and watch her favorite tv shows.

It makes me realize how much she sacrificed as a caregiver to my sister and me, especially while having a chronic illness herself. It’s inspiring to understand this now, because I feel empowered to do both. I can be there for my friends and family and take care of them, too. Of course, it can be limited based on my health status, but even verbally and emotionally, care can be given in so many ways.

What I can do

I used to believe that a caregiver's role was for a nurse to hold your hand, probably because that was what I grew up with. A nurse woke me up in the morning with breakfast on the table and a handful of pills. Then guiding me through treatment and rounds of PEP or Tobi-Podhaler.

Caring about someone you love is the first step. Taking loving action is the second.

It can even begin by asking the person if there’s anything they need you to do. Or if you can bring them something from the store, or be a listening ear, or be a shoulder to cry on. Find what works best in your scenario and use it, because everyone needs care from time to time.

If you are capable, it is so fulfilling to be both a patient and a caregiver.