“You’re so lucky.”
I’ve heard and read that all too often over the past year. I’m lucky I lived to my 20s with cystic fibrosis, I’m lucky I had a lung transplant, I’m lucky my recovery was relatively smooth. The phrase is usually followed up with, “… you don’t have to hurt like I do,” or “… that you didn’t die like my loved one did.”
It’s as if my 23 years before transplant, decades of being held hostage to the fear and pain of CF, is suddenly illegitimate in the eyes of many in the CF community.
I know those words usually come from a place of hurt, misunderstanding, or envy; they don’t make me angry. But the words do wound and inspire reflection on the importance of support within the CF community, rather than the undermining of each other’s experiences (often for self-gratification or to shame).
I “fondly” call CF my “genetic misfortune.” I drew the short-straw genes and was diagnosed with CF two months after birth. Life presented typical CF complications that all came to a head in 2016. Plunged into end-stage CF by a blood infection, mycobacteria, and septic shock, I played the Hail Mary: a double-lung transplant. And yes, I got lucky. After being rejected by nearly all the major transplant centers in the United States, the University of California at San Francisco took on my case and swapped out my lungs for those of a donor.
I truly do believe getting the transplant itself was lucky. Many die on the waiting list for organs, and like I’ve written before, post-transplant life feels like a fraction of the burden of life with CF-infested lungs (though I still have CF in my digestive system and sinuses). And I feel lucky that I never had severe diabetes, or liver problems, or DIOS, like many other CFers. And I’ve never had cancer.
But I became 100 percent deaf in the process.
Lightning struck twice, and zapped 30 percent of the hearing in 2010 and the other 70 percent in 2016. That didn’t feel lucky. Nor did I feel lucky having mutations that Kalydeco and Orkambi didn’t work for. I didn’t feel lucky to have had to leave my career, friends, and home behind to get a lung transplant across the ocean. I didn’t feel lucky in dealing with fentanyl withdrawal after the transplant. I don’t feel lucky that I need to take steroids every day for the rest of my life to cripple my immune system to avoid fatal organ rejection. Or that other immunosuppressants have given me kidney disease.
Despite the aforementioned pieces of luck, I am still at a general disadvantage compared to most of society. So it sucks when I open up to healthy people about my anxieties and am answered with, “But you’re lucky to have the transplant. Stay grateful.” I am grateful. But I am still human and struggling.
Frankly, many people treat the chronically ill as inspiration porn. So when we express any type of grief, they act as though we’ve rudely interrupted their televised programming for something unscheduled and unwanted.
This has led to me opening up less about my mental health, which, in turn, led to stacked heavy emotions collapsing the ceiling of the mind into a sinkhole of depression. Sometimes support is sought, rather than critique and lectures on gratitude.
There have, admittedly, been times when I wanted to tell some people that they should never complain either, because they have never experienced the terrors of chronic illness to start with. But that bitterness would be hypocritical. And (disclaimer) I am a hypocrite. I’ve found myself subconsciously belittling others’ “healthy people problems.” This column is as much advice for me as it is for you.
Life is not a competition as to who suffers most. We all have our struggles, our contexts, our perspectives. It makes us feel differently, experience differently. After a lifetime of major infections, a cold feels like nothing. But for someone with a lifetime of perfect health, a cold feels like everything. It is not my place to tell that person his or her cold is “nothing.”
This does extend to the CF community. I’ve grown tired of the posturing and competing over who has suffered the most. I understand taking pride in our hard-fought victories, but we do not need to take victory over each other. Shouldn’t we be happy when others don’t suffer from particular things? Instead, we often shove our battle medals in each other’s faces to passive-aggressively undermine the other’s experiences.
If someone begins a conversation about how lucky or blessed they feel, join in the celebration without guilt-tripping them with a reminder that you suffer more. If a person is struggling with something, listen. Be there for them, rather than against them.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.