Deep Thoughts on a Thursday

I’m having a hard time putting my thoughts into words. Which is why this blog has consisted mostly of Well-Being Wednesday posts for the past couple of weeks. But I don’t want to disappear from this blog again. And I don’t want my blogging to become halfhearted, either. So instead of writing a half-assed Well-Being Wednesday, I spent my time writing this, to share something that’s been swirling around in my head for quite some time.

Expectations. Learning to ask for help. Loneliness. The invisibility of CF.

What I’m struggling with right now involves all of it.

Most days I’m okay. I live my life like many 27 year olds. And I’m able to detach myself from the cystic fibrosis label. I think that’s a good thing.

For the most part.

The downside is that the severity of what having this disease means is often invisible.

Just yesterday I spoke with a man who lost his wife to CF at the age of 41. That’s only 14 years older than I am now. And it TERRIFIES me. Because that’s the reality of this disease. Unless a cure is found, it will kill me. I often tiptoe around this fact because I try to remain positive. But sometimes it feels good to be honest. To show people the ugly side of CF.

I’ve said it before and I’ll say it again: I don’t want pity.

But there are times where I do need acknowledgement. Support. And the understanding that it’s a heavy load to carry.

I can’t do it alone.

I want to make it clear that I appreciate how lucky I am. I have an incredible family who has been there for me at every bump in the road, and continues to be. And I have a boyfriend who deals with much more than most 28 year old guys. He goes above and beyond every.single.day.

But there are times I’m disappointed by people.

I would like to think that if I had a friend or loved one battling something as big as a terminal illness, I would help in any way I could.

And I have both family andΒ friends that do this. They know who they are and I will be forever grateful for them.

There are also people who don’t. There could be a million reasons for this. Me not communicating what I need. Them not understanding the seriousness of this disease. Me expecting too much. The list goes on.

What I struggle with is knowing what to do. Write these people off? Accept them as they are and know who I can count on? Verbalize my feelings?

Being one of 30,000 with a disease there are no in-person support groups for is lonely. Having people rally around you when you need them to makes that loneliness a much lighter burden.

“Every day, think as you wake up, today I am fortunate to be alive, I have a precious human life, I am not going to waste it. I am going to use all my energies to develop myself, to expand my heart out to others, to achieve enlightenment for the benefit of all beings. I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can.” ~ Dalai Lama

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20 thoughts on “Deep Thoughts on a Thursday

  1. You are such a strong woman, never forget that. I was with you when you found out about your CF, though we spent years apart, I am here for you now and always will be. I do understand how difficult some days can be, but those are the times when you have to surround yourself with those that love you. Remember, you are braver than you believe, stronger than you seem, and smarter than you think. HUGS! πŸ™‚

    • Thank you love! It’s nice to be reminded every now and then of who’s got your back πŸ˜‰ And I know I can count you as one of those people. So glad we got back in touch!

  2. While I understand your frustration, you have to keep in mind that in-person support-groups are extremely dangerous for people with CF. Bacteria like B. cepacia are transmitted so easily among the cystic population and have killed so many cystics…it’s just too dangerous.

    That being said, if you want to talk, you are welcome to use Facebook, Twitter, email or even ye ol’ telephone. Ashley and I are more than happy to talk to anyone who needs support, and she’s proof that this disease won’t necessarily kill you. We’re not a support group, but can offer the next best thing: understanding, acceptance and a voice in the darkness. You just have to being willing to trust a couple of (relative) strangers a little bit.

    • Thank you, Bo! I know I’ve said it before, but one of these days I will take you up on your offer of support, so don’t be surprised when a lengthy email shows up in your inbox πŸ˜‰

  3. I’ve got your back Katharine! Anytime you want to have lunch or dinner and chat, I’m here. (Mike can occupy himself by playing with Kula)

  4. Kat – this site and your continued dedication to spreading the word about CF and its hardships is truly amazing. I learned so much from you during our time together in college and I am grateful that your thoughts and words are still part of my daily life. While we have lost touch over the years, I will always remember our work around CF awareness and the friendship that we had. You are a very strong woman – I have thought that from the beginning. I wish you nothing but the best. Hopefully we can catch up soon – let me know if there is anything I can do or any way I can help to increase the awareness of Cystic Fibrosis across the nation. God Bless.

    • Adam – THANK YOU! This made me tear up a little. I would love to catch up – look for a message from me on FB πŸ™‚

  5. Thank you for your post. My brother is 27 and has CF, I’ll be forwarding your post on to him as soon as I’m done writing this comment.

    Way to be brave, way to be strong, and way to be honest.

    • Nicole, I’m SO glad you found my blog! I love when people who have a close tie to CF reach out, that’s one of the very reasons I started this blog. I hope your brother is doing well and finds this at least a little bit helpful.

  6. I can’t imagine what you are going through, Katherine, but you have my full support with whatever I might be possibly able to help with. If you ever want to send an email to someone and have them not read it, or read it and not respond, or anything like that at all, I know it’s not much of an offer, but I am here. ITB ❀

    • Thank you Lara! I might just take you up on your offer πŸ™‚ Even though we’ve never met in person, I have a feeling we’d be great friends. ITB ❀

  7. You make me so proud to call you my friend. WE are truly the lucky ones for having had the opportunity to get to know you πŸ™‚ Never forget that.

    xoxo.

  8. I’ve enjoyed reading your blog and continue to learn so much from you. While your story is specific to CF, I find so many of the lessons you share and thoughts you have relevant to many aspects of life and other struggles we all face. Your courage, optimism, and grace are truly inspiring. I am proud to call you my sister and feel fortunate that Delta Gamma allowed us to meet each other. Know there are people, even those of us far away, who are thinking of you and supporting you in our hearts and minds.
    ITB Abby

  9. I think you would be surprised at how many people would rally around you if you needed it. When I think of you, I think of strength, but if you ever need anything I am here for you. Told you more than once I’m proud of you and admire you all at the same time. I’ll never know what it’s like, but I do know everytime I read anything you write it brings me such clarity and puts the important things in perspective. You will always have my support and I will help in any way I can.

    • You’re probably right – and opening up like this makes me realize just how many people I DO have to fall back on. Thank you for being one of them πŸ™‚

  10. Hi! I found your blog through the Mobbies website and was so struck by the honesty in this post. I actually just wrote a post about personal fears, and after reading your thoughts it just puts things into perspective. I continually link my happiness to my career success, financial security, and pant size – all things that mean quite little when I take a step back to look at the big picture.

    • I’m so glad you found my blog, Lindsey! And thank you for such kind words. I’m glad you were able to benefit in some way from reading πŸ™‚

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