On Sadness and CF

Life’s been really wonderful recently. *knocks on wood*

I’m loving my job – both what I’m doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. And Mike and I are planning a big trip later this year. I’m soaking up life’s sweetness and feeling very blessed.

But there’s also a sadness I can’t shake.

The older I get, the harder it is to not become my disease. It’s incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.

The big one? Knowing a shortened life – one riddled with scary health obstacles – is a strong possibility.

As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It’s a daily struggle to live my life outside of my disease – to not let it seep into each moment of my day.

My biggest fear is that it’s changing me. The loneliness… the fear… the what ifs… I’m scared they’re slowly chipping away at who I am.

In many ways, having cystic fibrosis has helped me become who I am. It’s made me better, stronger, more empathetic. And I wouldn’t change any of that. But it’s also made me more fearful, less spontaneous, and always worried.

There’s this HUGE part of my life that very few people are able to understand. With cystic fibrosis, there’s no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash, scary thoughts to try and ignore.

It can be isolating and makes me feel separate from people, like I’m part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.

I know that much of this is just that, how I feel, and not how I’m actually perceived. And that’s a reminder I keep tucked away to pull out at times like this.

I’m sorry I’ve been absent from this space. It was mostly because life’s been keeping me busy with lots of goodness.

And partly because I couldn’t find the words. While I’m still not sure I explained it perfectly, I hope it at least shed some light on the emotional difficulties that can come with chronic illness.

Tonight I’ll make dinner with my husband, have a glass of wine, do my meds (while watching the hot men of “Chicago Fire” because, hello, that makes anything better), and let this sadness rest here for a bit.

As always, thank you for reading and allowing me a moment of therapy.



11 thoughts on “On Sadness and CF

  1. Hey Katharine!
    I tried to post something but not sure it went through because it wouldn’t let me log in.. But I just wanted to say that i think you are an awesome person and I’m sorry that you have to feel this way. You have my support and I hope that all the goodness going on right now continues for you!! 🙂

  2. I always like to read your blog, and I’m sorry about the sadness you can’t shake. But I love the way you wrote that!

    I hope that you can shake it soon, if only just a little here there, or more and more, and let go of some of that sadness and fear. We readers of your blog can only empathize, connect, and send our best best hopes for many more good times than bad for years and years and years to come.

  3. This makes me sad. But I get it. The worry never goes away but it does get easier. I’ve learned to mourn what needs to be mourned and move forward. I try so desperately to not remain in that sad place, this disease allows us to “see” what others live a lifetime to “see” and that has beauty. While there’s so much ugliness in the day-to-day, there is equally as much beauty.

    May you see tomorrow’s beauty!!

  4. You are one of the most amazing women I have ever met. I hate that there is sadness and worry for you. You have a beautiful heart and spirit; I love you and if you ever need to vent or talk…I will always be here for you! xoxo

  5. XOXOXOXO to you. You are a strong woman! And agreed, Chicago Fire makes everything better for the hour its on! Casey and Severide are wonderful therapy.

  6. You are an amazing woman and have been an inspiration to me! I know I can get through all of lifes ups and downs because you do with such grace and courage!! We love you!!

  7. I only know you through Renee, but I’ve read what you write & listen to your speeches. You are such a strong lady to go through what you do on a regular basic. Renee is lucky to have such a wonderful friend.

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