What is victory for us?
I know we crave a cure above all, but what is attainable in the meantime? When I began this column, titled “Victorious,” I viewed victory as a single objective: positivity. Living joyfully despite this horrific illness. And yes, I still think that is great. But it isn’t the only victory. Actually, an oversaturation of positivity could obstruct another triumph: awareness of our reality.
I first pondered this when writing “‘You’re So Lucky’: Respect Each Victory and Know It Comes at a Price”:
“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.”
Awareness is how we achieve community victories: funding for treatments and cures, equal employment opportunities for CFers, the recognition that our “invisible illness” is very real.
I’ve shared the unsanitized reality of CF in the past. I’ve received a couple common reactions:
- CFers say the same has happened to them, or they’ve felt the same, and that they appreciate the voicing of those realities.
- People without CF say I should be grateful I don’t have a worse condition, I’m still alive, and I got a lung transplant. That I should only be using my platform, this column, to encourage others.
The first reaction reflects that our community bleeds together, every day. We don’t want to feel alone; empathy is a potent remedy for this. I read the latter reaction as: “Write about this more. Because we’re not understanding.”
Without awareness, we aren’t a priority for fundraising. Without awareness, people think they can push us past limits without consequence. Without awareness, people tell wounding jokes about our weight and lifespan. Without awareness, our illness is increasingly invisible.
I historically have advocated primarily (not always) for joyful attitudes, but I’ve been wondering lately if I’ve injured my brothers and sisters with this disease by acting as if CF life is “easily” eased by mindfulness. Have I diluted their experiences by flooding the internet with purely positive testimonies that don’t recognize the true pains of this disease? It’s this question that has led me to write more about how my life was before I came to a period of joy with my disease. Because life wasn’t always peachy. Not by a long shot.
Our community bleeds, and many people will not care enough about us if they don’t know that. So many in our community, hundreds of thousands, have passed because of this disease. Some are content with the life left, as I expect I will be. Others claw for air to the very last seconds. Years ago, I accidentally saw a photo of my pen pal dying. With more plastic tubing than flesh, eyes sunk into the skull, mouth agape like a fish on land. Drowning on a hospital bed, hundreds of feet above sea level. Drowning in their own lungs, gurgling overflowing mucus. That’s cystic fibrosis.
I’ve never talked to anyone about that photo. I sit and tearfully type this in a coffee shop on a sunny day. I should have been in the same place as my friend many months ago, had my lung transplant not come along. People see my transplant success story and choose to focus on me thriving rather than the fact that the story could have been one of brutal suffering up to my last breath. Loads of people die waiting for those organs because lung disease doesn’t have the awareness it needs. People are too lazy to spare five minutes to sign up to be organ donors because they haven’t spared five seconds to read about or see the reality of this disease. People want their inspiration porn, but they don’t realize inspirations can’t live without support, even support as simple as taking five minutes to sign up to be an organ donor or contributing just $5 to the Cystic Fibrosis Foundation’s journey toward a cure.
CFers: I’m not saying to root yourself in negativity. I will continue to write about both the terrible reality of CF alongside my personal victories (which are often rooted in joy). But I will take care to respect the experiences of others by wording myself carefully to emphasize that my experience is not the experience of the entire CF community.
Non-CFers: I love my life. I do. But I didn’t always. And so many in the community don’t. If you blame them for being outraged and torn, it’s only because you don’t understand. I don’t expect you to understand, though I try to make you. I do hope you can accept that you don’t understand, though, and end unfair judgment of how CFers live.
I’ve built my own victory, but there are people with this disease who haven’t tasted victory. I hope they do one day, but they need the awareness and support of others to help them along that path.
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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.