On Cystic Fibrosis, Loneliness, and Writing It Out

littlegirl

image by Rikki-Tikki-Tavi

I go back and forth  a lot when it comes to writing about Cystic Fibrosis (CF) – writing about my Cystic Fibrosis. Some days it feels so coded not just literally in my DNA but in my life experience as a whole that I couldn’t possibly share my thoughts with any one person, let alone an audience of anonymous internet readers. Other days I worry that writing about CF would put me in a box – forever stamped a sick girl who blogs about mucus. And no one wants to read about mucus. But it’s on days like today, as I sit down on my porch with a cup of tea and my MacBook, when I think, well, shit – I guess I’d probably read it.

The truth is, having a chronic disease is lonely. And when you’re living with a rare chronic disease with a high risk of cross-infection making it difficult to meet the few others like you face-to-face, the alienation can be tough to shake. Though I have an amazing support network of friends and family who constantly motivate me to stay healthy and happy, at the end of the day, none of them have CF. And when CF is freaking them out, they get to talk to other people in their exact same situation – other parents, other significant others, other siblings, other friends. They can meet for coffee and hold hands and say “man, this sucks.”

For the most part, my only interaction with someone like me is when I stumble across the occasional local newspaper story about a high school senior raising money for the CF walk. Or worse – the obituary of someone who’s lost their battle. And while any exposure to this orphan disease is more than welcome, Cystic Fibrosis isn’t all just fundraising and dying – at least that’s what I’m hoping.

“Solitude is fine but you need someone to tell that solitude is fine.”
Honoré de Balzac

There are parts of this illness that I don’t want to think about, let alone scare my friends and family by saying them out loud. Maybe this stems from being a middle child – I always want everyone to be OK. But I think it also relates to the media’s portrayal of illness and our culture’s expectations and discomfort surrounding “the sick.” We want to be inspired by their bravery, by their indomitable spirit, by their thirst for the life despite the tragic brevity of their own. It seems the worst thing a sick person can be is angry or depressed.

So, here’s where I come back to the idea of writing about CF. But in the end this won’t be a “CF blog.” A little because of the difficulty and discomfort mentioned above, but mostly because I’ve got more on my mind than just my illness. Remember, there’s a whole lot that goes on between the fundraising and the dying parts. When I’m not thinking about CF, I’m thinking about a million other things I want to write about, things I want to do, places I want to see, snacks I want to eat after work. But I will include CF from time to time in these posts because I can’t shake the feeling that I’m not the only one disconnected by illness. Maybe someone else is perusing the internet like I have countless times, wondering how others with CF are getting by. Wondering if they’re happy, if they’re healthy, if they’re funny, if they’re angry, if they’re scared.

And if they stumble across any of my forthcoming blog posts, they’ll see at least for me, it’s often a combination of all the above.

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15 thoughts on “On Cystic Fibrosis, Loneliness, and Writing It Out

  1. Deborah the Closet Monster says:

    Reading this, it occurs to me I have not once read a blog about CF … though one of the few anchors of my childhood (my godfather) had CF. I’d love to have the opportunity to hear about all of his life–CF and otherwise–now that I am an adult. If only!

    I look forward to reading more.

  2. Samantha Welch says:

    You hit the nail on the head here Ali. One of my biggest inner turmoils over the loss of my mom is what SHE must have been thinking and feeling (also a middle child here here…), and how alone she must have felt throughout the short course of her disease- although not CF, her disease had similar alienating qualities like you described. I think about you often, and look forward to hearing your thoughts on your struggle with CF, as well as everything else you plan to write about it. You’re a good writer and a cool shit 😛

    • alidonahue says:

      Samantha, thank you so much for reading and taking the time to comment. You make an excellent point. The isolation that comes with being sick is hard on everyone, not just the person with the illness. I was just talking with a friend the other day about how hard it can be to watch someone go through an illness and not really know/understand what they’re feeling – how helpless you can feel watching them go through it alone. But I will say this: even if my friends and family can’t always relate to what it feels like to have CF, their support is the engine that keeps me motivated – to do my meds, to exercise, to live a normal life as much as I can. As corny as it sounds, they are my rock and without them, it’d be a heck of a lot lonelier. I’m sure your mom felt the same way about you and your family.

  3. Jim Morris says:

    Beautiful thoughts from a beautiful girl. Thanks for sharing. I’m okay being scared for you. It doesn’t freak me out. I’m even more okay being happy for you because you sound like you’re finding a lot of happiness these days. Love, (your decrepit middle-child) Uncle Jim.

  4. dawnstratton says:

    Ali, what you wrote about “the media’s portrayal of illness and our culture’s expectations and discomfort surrounding ‘the sick.’ ” makes sense to me. Having been someone who was “sick” at a young-ish age, I get what you’re saying about how people want to be inspired by them/us, and want to see courage and bravery and fearlessness. A lot of times, it seems like “sick” people are sort of pressured to show a brave face, because other people don’t want to hear about the hard stuff a lot of times, like when the person is angry or sad, like you’re saying here. That’s why I think it’s so important that you’re writing about your experience and being real with it. I think it will help a lot of people to feel less alone and alienated. It takes a lot of courage to be real!

    • alidonahue says:

      Dawn! Thank you so much for your kind words and for sharing about your own experience. I think there are a lot of misconceptions about what it’s really like to have a serious illness and I hope by blogging about it I can at least help myself sort out what it is I’m actually feeling – and maybe in turn, I’ll strike a chord with someone going through a similar experience. I hope all is well!

  5. juliekirk says:

    Thanks for taking the time to leave me the link to you on Facebook. This is comment No.171 of my hopefully 300!

    I completely understand that you want to blog about your illness while resisting the idea that your illness *is* you. I think we all battle with which aspect of our multi-faceted personalities we push to the foreground on our blogs. There are no clear answers … but it certainly does get you thinking about yourself and identity construction doesn’t it?!!

    In my travels around blog-world seeking out new blogs to comment on I found another blogger [maybe a similar age to you, different illness but similar perspective maybe] … so here she is: http://www.happylittlesyllables.co.uk/

    … in case you find something interesting there that mirrors your own thoughts [she recently wrote an interesting post called “30 Things You May Not Know About My Invisible Illness”]

    Thanks again.

    Julie 🙂

  6. Weston Dykman says:

    Ali,
    Thank you for writing this, I found your blog through a repost of the cystic fibrosis foundation. At first I saw the Orkambi videos, personally Orkambi effected me most at night when I laid down (made it really hard to sleep for a couple of weeks). However since I have felt quite well and my numbers as always have remained steady. I honestly haven’t found much noticeable benefit from it, but if it yields longevity then I feel it will be worth the price (OMG the price….).

    Honestly your blog is pretty funny, and you use a lot of good metaphors. No, CF is not always about the symptoms or the disease itself, but the journey of its people. Others I have known with CF have committed suicide shortly out of high school, I don’t think everyone understands the day-to-day impact of the disorder and how it effects everyone differently. I’m very lucky to be a “healthy” case of CF. If living with CF has taught me anything, its that life is short, I had to accept that I live with a terminal illness in the fourth grade. I remember thinking I might not live long enough to go to college, talk about a harsh reality.

    I wasn’t sure if I was going to reply to your blog, I don’t usually like to reply to internet blogs and I am not the heaviest social media user. However CF as you said leaves us in a state of perpetual loneliness, and I came to the conclusion that you wrote this blog looking to relate with others in similar circumstances, something I think everyone with CF needs.

    I live my life everyday to the fullest with my friends, CF is usually secondary, and many of them don’t know I even have it. So anyway, I guess here I am, not knowing what to say, other than I think your blog is pretty funny, and you capture the loneliness of CF, its symptomatic struggles, and the story of its’ people well. I hope you are healthy, I hope you are happy, and I hope CF has taught you the importance of enjoying every moment in life.

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