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Post by Jenny Livingston

Finding Acceptance: Grief and Cystic Fibrosis

We generally associate the five stages of grief – denial, anger, bargaining, depression, and acceptance – with death and bereavement, but there are many other situations that can bring about the same emotional process. The life of a person with CF is riddled with loss and grief. We mourn the loss of the “normal” lives we imagined for ourselves. We miss out on experiences and important life events that our peers go on to accomplish without us. We lose friendships and relationships because the other person doesn’t understand or honor all that CF is. We watch our dearest friends battle valiantly, but ultimately succumb to the same disease we are fighting. We experience loss after loss, without any time to recover between the blows.

An interesting thing about grief is that it has no respect for ownership. It doesn’t just affect those of us with CF, it pours out from our own lives and seeps into the lives of those who love us. Our parents grieve for the things we’ll never experience. Our partners feel helpless as they watch us suffer. Our friends see us pull away as our health declines. Having or loving a person with cystic fibrosis is a surefire guarantee that you will become well acquainted with grief.

Grief is never a linear or straightforward process, but when a person experiences acute loss (like the death of a loved one) they can generally expect to reach some level of acceptance with time. When it comes to chronic illness, the losses we experience happen on a day-to-day basis. There is no end in sight, which can make navigating the stages of grief especially tricky. Is reaching acceptance possible when the setbacks are so hard-hitting and continuous?

While I certainly don’t claim to be an expert, I wanted to share some of the things I’ve learned through my personal experiences with cystic fibrosis and the five stages of grief.

  1. Denial is our mind’s way of protecting us from extreme stress or emotional conflict. Initial, short-term denial isn’t necessarily a bad thing as it gives us time to adjust to painful or difficult situations. I imagine this is what happens when a parent first hears the words, “Your child has cystic fibrosis.” Initial shock followed by thoughts of “this can’t be happening” or “maybe the test results are wrong.”
  2. I experienced denial throughout most of my teenage years. I told myself that I wasn’t as sick as the doctors thought, that I was the exception and CF wouldn’t affect me the way it affected others. Refusing to acknowledge that something is wrong or downplaying the possible consequences are classic signs of being in denial, and if it were a river, I was about chin-deep with no clue how to swim.
  1. Anger, for me, came after my daughter was born and I began experiencing back-to-back hospitalizations. I was mad that my body wasn’t working properly. I was angry that my life had changed so drastically in such a short period of time. I was resentful that I had to spend so much time away from my daughter when I was hospitalized.
  2. I internalized a lot of that anger but found writing to be a healthy outlet. Through my writing, I discovered that there were two driving emotions behind my anger: powerlessness and fear. I had no power to take back what I had lost and no clue what the future held for me, which was terrifying. I learned that suppressing those feelings only seemed to make them stronger. The more I gave myself permission to genuinely feel them, the more quickly they would dissipate. Sometimes, we just need to be angry for a while.
  1. Bargaining is the stage of grief in which we attempt to negotiate our pain away. We call upon a higher power to heal us. We promise our bodies we’ll take better care of them if they just cooperate. We become intensely focused on what could have been done differently. If only I’d adhered to my treatments better during my teenage years. Or what if I had taken more supplements? Was God punishing me? I spent so much time needlessly blaming myself for something that was entirely out of my control.
  2. The bargaining stage is a step toward acceptance as it helps us recognize the significance of what we’ve lost (something we previously refused to acknowledge). But this kind of self-blame leads to unnecessary feelings of guilt and regret. It’s important to realize that playing the blame game won’t get you anywhere and that it’s impossible to bargain your way out of illness and heartache.
  1. Depression is the emotion most commonly associated with grief. Feelings of sadness and isolation can begin to consume us and might lead to harmful behaviors like skipping treatments and medications, or not keeping doctor’s appointments. The world can seem meaningless and overwhelming. We might ask, “what’s the point? This illness is terminal, so why fight?” Much like the feelings of anger I mentioned previously, I’ve learned that the more fully I’ve allowed myself to feel sadness and despair, the quicker I have been able to work through those feelings.
  2. It’s worth noting that rates of anxiety and depression are higher in people with chronic illness and their caregivers. When grief is ongoing, depression can change from situational to chronic. If you experience severe depression that doesn’t get better or you have thoughts of suicide, please talk to a mental health professional. If you don’t know where to get help, your CF care team can provide you with the proper resources. Whether its presence is temporary or long-lasting, know that your depression is understandable, and you are not alone.
  1. Acceptance (or what some prefer to call adaptation/integration) is achieved when we come to the realization that illness is a permanent part of our lives, but we can still grow, experience joy, and create a life of value. Most days, I accept this disease and the ways in which it has shaped my life. That is not to say, “it’s totally fine that I have CF” but rather, “I have CF, and I’m going to be okay.”
  2. My life doesn’t look like the one I once pictured, but I have found a deeper purpose and meaning than I otherwise might have. I still have bad days and can occasionally be found wallowing in depression or indulging in some angry writing, but I’ve accepted that those things are a necessary part of the process. Loss and grief will forever be present in my life, but that doesn’t mean I can’t also find hope, purpose, and fulfillment.

Wherever you are with your grief, take a moment to recognize that your experiences and feelings are valid. You are not alone in the challenges you are facing. The online CF community is incredible and has helped me in so many ways, including the management of grief. If you need help, don’t be afraid to reach out. Grief is an inevitable part of life with CF, but I am a firm believer that we can help each other through it. Though our individual journeys with grief may differ, we are all soldiers in the same battle.

Other posts by Jenny Livingston

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.