On Friendship, Cheryl Strayed, and Unending Loneliness

“Remember, we are all the same at our core. Everyone wants to be happy and no one wants to suffer.” – James Gummer

In the last few months I must have started and stopped a half-dozen posts, only to delete them out of frustration. Putting into words what I’m going through feels impossible. Plus, I get caught up in the fear of being judged. I know that in comparison to a lot of other CFers – to a lot of other people that are struggling – I’m lucky. I have an incredibly supportive husband, a beautiful home, a job full of talented and kindhearted people, and some deeply loving friends.

But I wouldn’t wish CF on anyone. And I’m trying to get comfortable with owning my feelings, my experiences, my story. Yes, my struggle isn’t the same as someone else’s, but that doesn’t make it any less valid or any less painful. Or any less relatable.

I believe that sharing in each other’s troubles and triumphs makes us better, more empathetic, more compassionate people. I hope I’m right.

***

I’ve talked about sadness, loneliness, fear, exhaustion before.

In the past those feelings have faded and with some time I get back to feeling like me.

It’s been more than six months and I still don’t feel like myself. I can’t shake the sadness. The fear. The anger. But mostly the loneliness.

Cystic fibrosis is a hard disease to understand, even for those who have it. I’m constantly learning from the CF community because this disease is different for each and every one of us.

It’s especially mystifying for those without it.

For the most part, cystic fibrosis is invisible. I look healthy. My life looks “normal.” Even the hacking cough is often assumed by others to be just a cold.

Inside is another story. I spend hours each day doing treatments and taking pills, to feel only a fraction as healthy as others. Those same meds, designed to help me feel better, have side effects – an upset stomach, headaches, risk of vision loss, etc. My sleep is often full of coughing fits at 1am, 3am, 5am. I wake up more tired than when I went to bed. I spend mornings spitting mucus into the sink in between putting on my makeup and deciding what to wear. Sometimes I cough so hard I throw up.

Very little of this is seen unless you live with me. Even then, you can’t see how some breaths are a struggle, or what it’s like to have an imaginary elephant sitting on your chest, or how it feels to cough for 12 of your 24 hours each and every day.

I don’t say this for pity, but because sometimes I fear I’m not honest enough. Putting on a brave face and being as positive as possible gets me through hard days, but it doesn’t always give an accurate look at what this life with CF is really like. For those without CF, it is an incredibly tricky, difficult, deceiving disease, which makes it hard to understand.

Because of that, I feel profoundly alone.

Part of the loneliness is a reality I need to get comfortable with. I can’t go cry on the shoulder of one of my CF friends because most are scattered throughout the country, and even if they aren’t we carry bacteria that’s dangerous to each other. And my friends without CF can never know what it’s like to be in this body. To fear every cough, every appointment, to know how uncertain – and short – my future might be.

The last few months have become so consumed with all things CF, it’s hard for me to untangle myself from it. It feels like everything – having kids, pursuing a career, traveling, finances – is wrapped up in having CF.

I’m starting to fear that being friends with me is too hard for some people. That my frequent sadness weighs them down. My inability to have conversations about life – without CF being a part of it – is frustrating. I fear they tire of hearing how hard it can be. How scared I am. That I need too much. That I expect more than most.

I am not like most 30 year olds.

I know it can be hard to figure out what to do or say or how to be around me. One of my writing idols, Cheryl Strayed, put into words what I couldn’t: The best thing you can do for anyone going through something, whether that thing is short lived or permanent, is to “bear witness” to their pain, their struggle, whatever it is.

“…the kindest most loving thing you can do for her is to bear witness to that, to muster the strength and courage and humility it takes to accept the enormous reality of its not okayness and be okay with it the same way she has to be.

That’s what the people who’ve consoled me the most deeply in my sorrow have done. They’ve spoken those words or something like them every time I needed to hear it; they’ve plainly acknowledged what is invisible to them, but so very real to me. I know saying those cliché and ordinary things makes you feel squirmy and lame… It feels lame because we like to think we can solve things. It feels insufficient because there is nothing we can actually do to change what’s horribly true.

But compassion isn’t about solutions. It’s about giving all the love that you’ve got.”

If I can give one piece of advice, it’s this. If you have someone in your life who’s struggling, let them know you’re there. That they are enough. That they’re doing a good job. And that you’re sorry they have to go through this hard thing. That it sucks.

No, you can’t fix it. But they know that and they don’t expect you to. The best thing you can do is love them as best you know how.

And if you’re feeling lonely, like me, my words of wisdom are to sit with it. Feel as much as you can and know that this period of struggle is a lesson that will bring you to a version of yourself that’s stronger, more compassionate, and ready for whatever life throws your way.

At least, that’s what I’m telling myself.

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19 thoughts on “On Friendship, Cheryl Strayed, and Unending Loneliness

  1. Great post. After 34 years of CF I had to get a port last week. I felt defeat for sure. No longer will I look “normal” to the outside world, especially in a tank top. Friends don’t really understand what a transition point this has been. Fortunately like you I have family and a man who are super supportive–but it’s still lonely sometimes despite that.

  2. I am so very sorry you have to go through this. It isn’t fair. Life sucks, a lot, for you sometimes, and this is just not something I could ever have imagined my own child, your sweet self, would have to go through. And I do love you with all my heart, and admire your courage, strength, and perseverance. You ARE my hero, whether you feel like one or not. I am here for you…always.
    Your mama

  3. Anytime you need a shoulder, I’m here. Just a little bit more long distance than when we lived together or lived in adjacent neighborhoods. So sorry for all your struggles, I know it isn’t easy.

  4. Heart-wrenching posts are good posts. I cried. And I’ve never even met you! You touch people with your honest writing. It’s true that sometimes when I see your Facebook posts–the pretty face, the fun lipstick, the adorable facial expressions–it looks like you’re having a great life. And you are! You are also having a sucky life sometimes. And that’s what CF is, that’s what your post described. The outward person, the inward, mostly inivisible struggle. I send you love from my place–my peaceful balcony in Mount Washington that I’m sure you’ve seen a thousand Facebook pictures of–love and peace and, yes, compassion.

    Pamela

  5. I love you, Katharine! You could never be boring or frustrating to me. You are one of the most beautiful, strong and interesting woman I’ve ever met, CF or not! Keep being honest and telling your story. xoxo

  6. Thank you so much for this profound and very insightful post. Many people in my closest circle are struggling…doing their best to cope with challenges of many different kinds. I’ve always found it difficult to know how to best support them. Through your honesty and willingness to put yourself out there, you have given me a great gift today. I appreciate your thoughts on how to reach out and be there for others more than you know. (Keep writing– you are very gifted!)

  7. Cheryl Strayed really has a way of finding the right words, doesn’t she?

    “I’m starting to fear that being friends with me is too hard for some people. That my frequent sadness weighs them down. My inability to have conversations about life – without CF being a part of it – is frustrating. I fear they tire of hearing how hard it can be. How scared I am. That I need too much. That I expect more than most.”

    I can never truly understand what you’ve been through, or what you still go through, but I know what this in particular feels like. I know what it feels like to have so much sadness and pain and to worry or see that in leaning on friends, you are driving them away exactly when you need them the most. It is precisely that feeling that drives me to try to be the kind of friend for others that I want to have.

    I’m so sorry you’re going through a rougher time right now. My thoughts are with you.

  8. Very well said! I have a son with CF who will be 24 next week as well as a 10 year old niece who has CF. Even as a parent I feel lonely because people just don’t understand what it takes for my son to stay healthy and what it takes to support him in his efforts.

  9. Beautiful post. So much resonates with me. Sigh. I can’t tell you how many nights I’ve woken coughing and am feeling like I am consumed by the disease. Balancing all this stuff is hard. Plain and simple. You are absolutely amazing… I will keep sending you good vibes and send an intention in to the world for you. Hugs

  10. I really loved reading this, especially when you say that just because you’re situation might not be as dire as someone else’s doesn’t make it any less real or painful. I love that – I’ve often felt like I can’t complain or be unhappy with my own health when other people have it worse than me. I’ve also had people say they feel like they can’t complain or be upset about their own health because I have it worse than them, but that always makes me so uncomfortable! I think it’s important to be grateful for whatever we do have and aware of how it could be worse, but I think it can be detrimental when we let other people having it worse get in the way of fighting for things to be better. Sometimes I think spoonies can become unintentionally complacent about bad circumstances because we forget that there’s another way. Yes, it could always be worse, but it could also always be better, and we owe ourselves the chance to acknowledge and grieve that truth. I also wrote a piece recently about doing a good job and I’m going to share it with you here in case you yourself need a little encouragement. Thanks for your honest and eloquent words!
    http://findingmymiracle.com/2015/06/05/youre-doing-a-good-job/

  11. I am so sorry to hear about your daily struggles. Life does suck sometimes and isn’t fair sometimes. I loved hearing what you do have, I try to remember the positives in my life when I get sad or lonely. Prayers & positive thoughts to you 🙂 🙂 🙂

  12. This rings so true, as someone who witnessed and loved someone with CF and someone who has struggled having lost them.

    My heart aches for you and the weight of your struggle. Life is not fair.

    I’ll end it at that because sugar coating, though sometimes helpful, is at times not necessary.

  13. I’m 27 and I have CF. I found this blog post and your story to be very relatable to me. I too had a late diagnosis when I was 22. I’m still dealing with adjusting to the diagnosis and lifestyle. But I have to agree that one of the hardest parts of everything are the feelings of isolation. I am not a “normal” 27 year old. Sometimes my friends and I joke around that I’m a grandma, because I’m tired all the time, have difficulty hearing (due to cf ear problems), body parts are always hurting, etc. The problem is that I’m not like other CFers either. I’ve never had a lung transplant, don’t need one, I’m not in the hospital often, I have a full time job and function pretty well. I would never wish for the bad parts of cf to happen to me. But it does make me feel like my case of CF is so unique, that I’m not like anyone else. I am completely alone.
    A lot of people say in the digital age with social media, how can you possibly feel alone? You can connect with anyone anywhere anytime. Yet I have still found it very difficult to express my feelings about cf and my lifestyle to people I don’t know or people I do know well. I don’t know how to reach out to people for fear of judgment. Even posting this comment is out of my comfort zone! I just wanted you to know that you are inspiring and one of the very few people I have found relatable.

    • Micaela, your comment brought tears to my eyes – I am so glad you stepped out of your comfort zone for a minute to reach out. I can relate to just about everything you said. Feeling “normal” is something I’ve been thinking about more and more, but when it comes down to it we need to remind ourselves that there really isn’t such a thing. Yes, our lives look different from our peers and that can be incredibly difficult, and it probably always will be. But I’m sure there are plenty of things about your life that you wouldn’t ever want to change. It’s those things, no matter how small, that I focus on when I feel like my life has been made “less” by having CF. If you don’t mind, I’m going to send you an email so we can chat more.

  14. Wow I’ve only just found this blog, but it’s made me feel I’m not alone and other people feel like this. I was diagnosed with CF at 35, so compared to most I’m luck. But in the past 5 years so much has changed, before CF I was an unfit and had badly controlled asthma, which only need time and effort on my part to get better.
    Now having turned 40 in the last few days, I have an incurable illness, that won’t get any better. I’m not going to have the family I/we wanted, and I know in my heart that my husband doesn’t hold that against me, just sometimes I feel that I’ve let him down. I’m struggling at the moment, organising my 40th, everyone wants to help I just have to ask. But I can’t I know there will be times when I have to have their help and I don’t want them to be sick of me begging. But I’m sat here completely exhausted, hoping on Monday they don’t put me on IVs again, as I can’t do with all the throwing up. Thank you for letting me know that other feel like this too.

  15. I just found you through the CFF website. I am a CF mom. My daughter is only 10. I would never, ever compare the experience of being a parent of a child with a chronic disease to living with the disease. We live different lives. But, I get it. I know loneliness, due, in part to this genetic quirk we share. For me, CF isn’t the only culprit, but I, too, fear that it’s getting harder to be my friend. I long for someone to ask how I’m doing; for someone to tell me I’m doing enough; for someone to care. And as soon as I acknowledge that longing, I want to take it back. In seems selfish and weak to crave understanding and compassion.
    Your words are beautiful and powerful. I have a lot to learn from you. I will be reading.

  16. Beautiful post – this week has been “one of those weeks” for me and, while I usually am very positive, optimistic and push myself (probably too much to overcompensate), I had a hard time suppressing the loneliness and fear that CF can bring with it.Sometimes you need to allow yourself those day or days to feel defeat, self-pity and misunderstood. Thankfully, the feelings have passed for now but I think only because I gave myself the time to cry and feel scared and sad. It’s not easy. Glad to have found your blog.

  17. Thank you for this post, I am a mother to a 2 year old with cystic fibrosis and even though I’m not a sufferer myself I feel the lonliness of being a parent of a child with an uncertain future. Others struggle to understand what it is like for my son already at only two years old and no one without cf or without a child with cf ever really understands this complex disease and how it affects so many aspects of your life. Thank you for your honesty X

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