5 Things I Have Learned Living With Cystic Fibrosis
The hardest thing about having CF is the invisibility. We look like the picture of health – like we should be full to the brim with endless energy. It is a misconception that crosses the board for many chronic illnesses.
Chronic illness "fine" is not healthy person "fine"
I want to scream from the top of my barely functioning lungs:
“Stop looking at our healthy exterior, we are fighting a battle you know nothing about under here!”
It is tough. Find your voice and be heard. Chronic illness "fine" will never marry up to a healthy person "fine," and that is okay. Remember that the small wins matter, always. Some days getting out of bed is an achievement. Canceling plans is a necessary evil. It does not make you any less of a person just because you need to live your life at a different pace to the next twenty-something with fully functioning bodies.
Having a flare-up is not your fault
Cystic fibrosis is a liar and this is the biggest lie of them all. It tells big fat fibs by distorting my reality. Throwing a curveball with a good day among the horrendously bad ones. Or mocking my abilities when I think we are in for a “sick-free” run, only to land in the hospital.
No matter how much effort or time is spent looking after every single aspect of my health, I will still have a flare-up. My chest will still take a turn. I will still need to go into hospital for treatment. That is just part and parcel of living with a chronic illness.
I spent many years beating myself when I had missed a neb, but it just isn’t worth it. Missing that one neb is not the reason weeks or months down the line I am flaring again. Although CF would like to trick me into thinking it is.
Mental health matters
A study was carried out to look at depression, anxiety and their relationship with chronic diseases which highlighted having a physical illness is one of the strongest risk factors for depression. Moreover, evidence now shows that depression is also a risk factor for physical illness and for early death.1 Yet, I don’t think we give enough space to how much our mental health matters.
We call cystic fibrosis patients Warriors because that is exactly what we are. We have an armor of resilience, which is somewhat created through the sheer strength of our psychological willpower to not give up or give in. Some may just call us stubborn. What people do not hold in mind is that we have no other option. We either fight or we fall. What if sometimes we appear strong because that is all we can be.
You are not alone
“Friendship is born at that moment when one friend looks at another and says: 'what you too?' I thought I was the only one.” - C.S. Lewis
Something beautiful about living with CF is the level of empathy you encounter time and time again. Whether you are on the receiving or giving end, you have a life steeped in kindness. There is something about people who go through great suffering that enables them to experience positive psychological changes such as heightened compassion. And who doesn’t want more of that?
Reaching out to a friend, becoming part of the wider global CF community or connecting with other “chronics” allows us to find a place where we belong inside this world of invisible disability. A place where others like us exist. A place where I learned we were not the only ones.
You are not your illness
The best for last. This one is important. It is easy to get lost among the endless hospital appointments, physio sessions, unending nebs, drug deliveries, weeks of fatigue, and just become that sick girl.
Many times over the years, I have lost my identity to CF when it is taking up far too much of my time. When it edges its way into every area of my life. When I need to cancel plans, take time out of work, miss seeing friends, head into hospital… Those times are when it inevitably happens. I become the epitome of CF. It consumes me and all that I stand for.
In those times when all I have is the energy to focus on CF and the next step directly in front of me; I often remind myself that I am not my illness. Above all, the beauty of my life will bloom again, bigger and brighter than before because I am determined to be more than just that girl with CF.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?