I have so many thoughts and feelings and things I want to share. But this one seems most important right now.
Most of you may not know this, but cystic fibrosis patients aren’t able to be around each other.
About 10 years ago, not long after I was diagnosed, the foundation discovered we could contaminate each other with very life-threatening bacteria. To prevent the spreading of these germs, an infection policy was put in place. The original guidelines stated that CF patients could not be within three feet of each other. Whenever I attended CF Foundation sponsored events, I was given something to wear – like a red carnation, a ribbon, etc. – to signify I had CF, that way us CF’ers could steer clear of one another.
Recently, researchers discovered that there are even more scary bacteria than they originally thought – and they’re even more contagious. So the regulations were amended to reflect the severity of these new discoveries. Now, instead of three feet, we’ve been instructed to keep six feet apart. And at any indoor CF Foundation-sponsored event there is to be only one CF patient present.
For a disease that is already isolating, these changes were hard to swallow.
Had I been diagnosed in infancy, I probably would have spent my childhood at camps and support groups for CF patients, forming lifelong friendships with kids that understood just what I was going through. But because of my late diagnosis (both a blessing and a curse), I’ve only known the world in which we can’t be near each other.
This means I’ve never met another CF patient face to face; I’ve never given someone else with CF a hug; I’ve never visited a CF friend in the hospital.
It’s made things quite lonely.
My husband, family, and friends do all they can to listen and give advice, but they know it’s not the same as if it came from someone who knew exactly what I was feeling.
This time of transition is proving to be especially difficult for me.
Most of the time I try to put on a brave face. I have CF and, until a cure is found, there isn’t any changing that. So what’s the point in wallowing in what sucks about living with this disease?
But right now? I’m aching for someone who knows how hard it is to make big life decisions when you don’t know what your future holds – or if you have a future at all.
Right now, the average life expectancy for a person with CF is 37. This year I turn 29.
I don’t want to limit my life because I have CF, but I also don’t want to waste it.
When it comes to my professional life I’m torn. I don’t want to spend my healthy years working toward a career I won’t ultimately be here to see. But I don’t want to throw in the towel and give up on pursuing what I love. (Not to mention the fact that we’re not in the financial position for me to stop working altogether.)
My personal life brings its own struggles. I feel myself pulling away from friends because I feel so different than them. It’s hard to watch the people you love do things you aren’t sure you’ll ever get the chance to experience. I desperately want to be happy for them, to share in their joy. But I also feel this deep sadness for myself and what I might not get to do.
But I don’t want to make them feel bad. I don’t want to take away from their happiness.
So, not knowing what else to do, I end up keeping to myself.
It’s times like this that having coffee with another CF patient would help. Being able to talk to someone who’s been there – who understands what I’m feeling – would make a big difference. It would give me an outlet. Somewhere to turn other than keeping everything inside.
Instead I feel frozen. Unable to make a decision. Unable to explain how I’m feeling.
It can be hard to ask for help. To admit you aren’t doing as well as it may seem. In a society that views vulnerability as weakness, admitting to feeling scared and unsure is damn near impossible.
This is the one space I have to share what it’s truly like to have CF. To share the emotional toll cystic fibrosis can take. To let go of some of what I keep bottled up. And to hope that someone else reads this and can help in some way, however small.
It’s also a way to reach each out to those in a similar place. Those who also feel alone. Those who don’t think anyone understands.
Because CF or no CF, we all have our own stories and our own struggles. And ultimately we all just want to be heard.
From A to Pink | A Blog by Katharine Scrivener 
I can completely relate. A few years ago my CF care team gave into my rants and helped me start a support group for CF’ers. It’s been the biggest blessing and the support is unreal. I’m turning 31 in June and am battling which direction to pursue on a multitude of topics. Your not alone! I’d be happy to Skype or phone or email. Keep your chin up and I think being vulnerable shows courage….
Kari! This was exactly the response I was hoping for! Thank you for finding this post and commenting. I’d love to Skype, phone, email, whatever works for you. Send a email to FromAtoPink at gmail dot com and we can chat further 🙂
I don’t have CF and I want to give you a huge hug! I have no idea what this must feel like. I’m not going to pretend to. I’ve told you before my girlfriend’s niece AND nephew have CF in the same family. Makes me sad for this brother sister hug situation. Just know I’m reading and cheering for you no matter what decision you make or don’t make. Thank you for sharing your story. I’m reading 😉
Thank you, Nelle, for both reading and cheering. It all makes sharing my story worth it 🙂
Kath, that post brought tears to my eyes….I will never truly understand what you are going through, but I will be hear to listen and help in any way I can. I admire your ability to write out everything you are feeling and share it with the world. I admire and adore you. Xoxo.
Thank you, Nicole!
Katharine, you’ve always been one of the most supportive and wonderful people that I have ever had the pleasure of knowing. I want you to know that 100%, no matter how far away I am, I am always ALWAYS here for you. It may not be quite the same, but I have a very good friend in a similar position – The disease isn’t the same, but I can tell you that the feelings are. And I know that Adrienne would be more than happy to give you the biggest hug EVER. You’re a fantastic person and I know that you’ll figure out what’s right for you. We’ve all got you back. xoxo.
Tessa, thank you SO much for such sweet words! It makes me (selfishly) wish so much you were still in Baltimore so we could grab coffee 🙂 An email is the next best thing, so I might be sending you one soon. And if Adrienne is ever up for a someone to share a “woe as me” with, let me know. I’m definitely up for chatting with anyone who even remotely knows what it’s like. xoxo
I can’t relate to what you’re going through. I seriously doubt I can help in any way. But I am thinking of you and hoping you find comfort and support.
Thank you so much, Mel! Just because you can’t relate doesn’t mean you can’t help. Your comment alone, letting me know you’re reading and sympathizing, helps more thank you know 🙂
I debated posting on account of my distant connection to you. Emily and I met in our freshmen year at Providence College before she transferred and have only reconnected recently now that we are both living in NYC. From her postings, I found this space and have been a regular follower. I feel a little bit like a groupie. You are an amazing person, and ironically while you feel so isolated, I feel like I know you as a friend! If its an consolation, I think being in your twenties, even without CF and even with significant others, can be an isolating time of growth. Others milestones can feel like a measuring stick and we are left wondering how we can find our own fulfillment in the here and now, as our personal realities allow. You have such a gift in that you are able to harness your self reflection and insight in an articulate and relatable way. Perhaps you can use your creative energy and need for professional purpose to fill the void that others with CF are undoubtedly feeling. With social media that way that is, you could create the space for an artificial closeness maybe? An online coffee house over Skype? Guh! This is my personality by the way, to see hurt and want to fix. At any rate, know that I am rooting for up and wishing I could reach through the Internet and give you a hug and pour you another glass of wine. xo
Hi Morgan, I’m so glad you commented! I love that you found me through my sister and consider yourself a groupie – that puts a big smile on my face 🙂 You are so right – being in your 20s almost guarantees feeling isolated at some time or another. It’s so nice to be reminded that people understand even if they don’t have CF. The response from this post has certainly made me feel less alone already. And thank you for being part of that! I also love your idea of an online coffeehouse… I might keep that in my back pocket and see what I can make of it. xo
Of course it’s not nearly the same as being together in person, but there are lots of us CFers yearning to connect — for support, advice, information and friendship — and doing it online. This disease is tough and being able to talk to people who REALLY get it is so helpful and special. I am 28 with CF and I stumbled upon the online CF community about 4 or 5 years ago. It has been a completely transformational experience for me. I am more than happy to tell you about some of the online groups I participate in and just to chat! Feel free to email me (I think my email is attached to the post?)! I also think we’re linked on twitter (@emilykg1).
Emily – Thank you SO MUCH for commenting here and offering your support. I’d love to know of any online groups you’re a part of and find helpful. I’m realizing that as involved as I’ve been with the CF Foundation, I haven’t been very connected to the community itself, and I really want to change that. Be on the lookout for an email from me!
These posts from Katharine’s online community and friends has brought tears to my eyes. She is so lucky to have your listening and to have you all at her back, CF or not. You are right, she is an amazing young woman with true grit and open hearted honesty. I am proud of her, and while I suffer the pain any mother suffers over the sufferings of her child, I know Katharine is on a path, a journey, and she is walking it with courage and a smile. She is my hero…I tell her that often. It appears that she is providing many with a way to see life, in all its ugliness and beauty, as big as possible, so that her story has as many possibilites for its unfolding as there are stars in the heavens. Thanks you all for your love and support.
Kate, Katharine’s mom
It has always surprised me how well Katharine has done through the last years, looking more beautiful and healthy in photos than just about anyone. It is devastating for me to hear that CFs can’t be around each other!!! (BTW, which Kate am I talking to?) I know a woman named Laura who is the Godmother of one of my Emilie’s sons; we were together in the labor room when he was born. Later Laura married and had 3 boys, the first 2 with CF. She and her husband have moved to a little village that is a ski resort on a mountain in Italy where he has family, and the air there is exceptionally good. Good air does make a difference they say. Makes sense.
I can offer a pastime that has definitely helped me to not feel so lonely as an only child whose direct relatives are all dead. Genealogy! As I trace back my various lines like a lady detective, I am amazed how much pleasure I feel by getting to know, in some way, the people who went before me. They become very real in my life! And on your bad days (at least on my bad days), I can go to Google, and there is always something free I can find about the various histories. historyhx.culturesbenefits the whole family too.
Marylee – Thank you so much for such kind words. I love the idea of taking a look at my genealogy – it’s definitely something I’ve thought about doing before. I hadn’t thought of it as a way to help me deal with loneliness before, but I really think it could help!
Hi, Marylee! It’s YOUR Kate you are responding to…me. My daughter is Katharine, to eliminate confusion between us! So, I see you’re still into the geneology work…that’s great. My poor kids will never know from whom they came, I guess, unless they get into that themselves…I never have time to investigate it! Thanks for writing!
Thank you, Momma! I’m so lucky to have you in my corner 🙂 Love you.
what a beautiful, insightful young lady. Sharing helps others, Skype. stay strong and enjoy every minute!
Thank you, Cindy!
Katherine, I don’t know you. Sadly, we have never met. I know your husband because he used to work for me eons ago, and Mike was such a joy to work with that I have always had a soft spot in my heart for him. He is a truly wonderful person, and I was so incredibly happy for him when I found out through FB that he had found you. Since then I have watched your relationship from out here on the sidelines, quietly rejoicing in your obvious love for each other. It’s a rare and beautiful thing.
Reading your post tore at my heart. I don’t know what it’s like to face a disease that you know will someday take your life. I do know what it’s like to deal with abuse so extreme that your life will never truly be your own. I know what isolation and depression and despair feels like. I know how hard it can be to focus on the joys life holds when you have to fight to contain your fear. Everyone’s situation is unique, but we are all human together.
Don’t ever feel ashamed or weak. Only the truly courageous can accept their own vulnerabilities and their need for support from others. It takes guts to be as honest and open as you have been here. You are clearly a very strong and insightful person, Katherine. Don’t be afraid to reach out. I hope you find others to Skype or chat with who will understand the burden you carry in ways the rest of us can’t. I think you have a lot to offer in return.
Please consider yourself hugged, if you don’t mind one from a stranger. And I wish I could offer your mother one as well. I have a daughter of my own who just turned 31 this year. She is my best friend and the light of my life. It sounds as if you and your mom share a similar kind of bond. My heart goes out to you both.
And I just realized that I misspelled your name. *blush* My apologies, Katharine.
Josette – I’m so happy you found me here through Mike! I agree, he’s quite a guy and I’m truly lucky to have him by my side, especially when dealing with something like this. I’m so sorry for your own experience with despair and loneliness – and you’re right, it’s these human experiences that connect us all. No matter our story, we can all find a way to connect and help each other. Supportive readers like you remind me of that 🙂 And yes, I have a truly wonderful relationship with my mom for which I am very thankful for. It sounds like you’re similarly warm and caring. Thank you for the virtual hug – it certainly helped me feel less alone.
Hang in there. There are many of us who actually understand this. Write and then write some more. Keep in touch.
Thank you, Joe! I’ll definitely keep writing. Thank YOU for reading 🙂
Katharine, I’m not sure if we’ve ever met (maybe once briefly?), but I worked with Mike several years ago at Ripken. I’ve peeked in here from time to time, but this post really spoke to me. I admire your strength and courage in going through this. And I wanted to thank you, especially, for writing this: “Because CF or no CF, we all have our own stories and our own struggles. And ultimately we all just want to be heard.”
To a much, much lesser degree, I understand your struggles. I spent the latter half of last year (into this year) dealing with chronic pain that was undiagnosed. Not life threatening, but I totally get the inability to share your feelings about what’s going on and feeling like no one can truly understand you, feeling like you’re drifting from your friends, etc. And I am a writer as well, so I can relate to using this as an outlet.
I wish you all the best. Mike is one of the best people I’ve ever met, so even without knowing you, you’ve got a place in my thoughts and prayers. 🙂
Hi Lindsay! I think we’ve met once (maybe at an O’s game when Brendan was in town) but I know I’ve heard lots about your Ironbirds days with Mike 🙂 I’m glad you decided to comment – and thank you for reading! And thank you for sharing your own struggles. I’m sorry you’ve had such a battle with chronic pain, and I can sympathize with not having a diagnosis (it took over three years to them to figure out I actually have CF). I’m also glad this resonated with you – knowing it’s helped people, even in a small way, makes sharing what I’m going through 100% worth it. I hope you get some resolution soon and can start to feel a little better.
Hi Katharine. CF can be oh so lonely and hard. I know full well because I have CF too. I don’t know you and you don’t know me but I’d like to get to know you and share your load. Email me at capturingcf@gmail.com if you’d like a new pen pal.
Janette, I love hearing from other CFers, so thank you so much for commenting! I’ll definitely be sending you an email – I’m really hoping to become more connected with others who understand what it’s like, so thank you for your offer to share my load. You’ll be hearing from me soon 🙂
[…] brings the meaning of the word lonely to a whole new level. Katharine is always such a strong and inspirational […]
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Hey. How is it Going? I am 26 with CF and live in London. Stumbled across the blog and I can imagine how you feel. I have friends from when I was a kid (diagnosed at 3) and we were a little gang. Sadly, like you there are lots of people who aren’t able to remember those times but online is a good way to keep that up. There are a couple of groups of fb that will keep spirits up. Email me, would be good to get in touch, it will help, I promise! I can introduce you to one of the better groups I use online.
Keep up the blogging!
Hi Michael! I’m so glad you found my blog. One of my favorite things about this community is being able to “meet” people all over the world. While I’ve been involved with the CF Foundation, I realized I’m not as connected to other CFers as I’d like, so I would love any and all resources you use to combat the loneliness that comes with having CF. I’ll be sending an email your way soon.
Hello. I was diagnosed with CF at birth. And was never allowed around other CFers. My first hospital admission saw me in the children’s ward at our local hospital with another girl with CF at the Same time. We were lucky and begged to be put in the same room, we got tests done to ensure we couldn’t infect each other (pseudomonas) etc and came back okay so we got to spend a few days together. That was my first and last encounter with another CFer.
I totally hear your pain, just wanting to sit down and chat to someone who knows what you’re going through because as much as everyone else tries to, they don’t quite understand.
Loving your blog
[…] 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. […]