Bonding Over Shared Battles: Can You Relate?

[katie-bagshawe]

Hello Charlene! Such an interesting question that I feel is a ripple to anyone living or affected by PF, mostly in part that the lack of awareness can feel so isolating, so to find someone dealing with the same issues is a strange blessing to come across. Here in the UK it is difficult in our area to even come across a healthcare professional who knows about PF (and a lot of lung diseases with the exception of cancer and COPD) so it can feel very alienating, particularly in your own friendship circles who might struggle to connect or understand the depths of what you’re going through. As a younger person I’m sure that might have hit you extremely hit Charlene so I totally admire your bravery and courage for being such an honest advocate to hopefully help others break out from their shell and seek comfort maybe in these forums or by visiting support groups. On a personal experience, the first time me and Dad attended a support group, he was fascinated to see others the same age as him or to be using similar oxygen equipment. It opened up the fact that this world existed and that he wasn’t alone, he didn’t necessarily seek friendships from any of the members, but I think it was comforting for him to realise that others had been dealing with the same struggles. From a psychological point of view, it was positive and it helped him fight back a little harder that there was a secret army of people out there and he wanted to be a good advocate himself, even if he was the only one in the area.

[Charlene Marshall]

I couldn’t agree more Katie, thank you for reading and offering your insights! Shortly after my diagnosis, I was longing for another young adult to come forward and say they also were living with IPF as I felt this overwhelming sense of loneliness, like no one could understand what I was going through. When this didn’t happen, since it is very “rare” that young adults have IPF (although, no longer as rare as they claim I am learning) … I had to reframe my expectations, and realize that others living with a chronic illness or lung disease (CF, COPD, PH, etc) could still relate to my experiences. This is when BioNews essentially rescued me without even knowing it! I’ve met so many amazing young adults facing chronic lung conditions, and they just “get me”… and, it has made the world of difference in my ability to cope!

As a caregiver, I certainly imagine the same feelings would be present when navigating an illness like PF. This is why I believe (though, I know others have opposing views) support groups are so helpful and beneficial, to reduce those feelings of isolation and loneliness. Even platforms online, such as this forum, give me so much comfort and I’ve heard they do for others as well so I am so glad this resource exists for those of us facing this cruel disease.

Thank you for all of your kind words Katie, and as usual, for sharing a bit more about your Dad’s experience. He sure sounded like a brave man, facing a support group is not easy but I am so glad it brought him some comfort during his illness. He was so lucky to have you!

Warm regards,
Charlene.

[katie-bagshawe]

I can’t even begin to imagine how isolating it must have felt for you Charlene but I am so grateful for those that came to you in your time of need, and provided a platform and a community for you to find solace and support in. As you say groups aren’t for everyone, we certainly struggled since neither me or Dad are social bunnies, we perhaps preferred to observe and he always found it difficult when the talk heavily relied on transplant since that option was only available to so few (like he said, you would win a lottery to get that kind of achievement). But even to know that there are others there or somewhere to go to talk to, that’s also why I love forums as it doesn’t have to make you feel so on display by being able to type things you might not say out loud.

However, on the flip side it is upsetting to lose friendships. Personally I lost a good friend of mine who through the two years of my Dads illness offered no support and only reappeared once he passed away. It was hugely disappointing for me considering how much I felt I’d given to her during her own times of turmoil, though it was more saddening that perhaps she didn’t have the same view as our friendship that I did. Equally, there are others who I know treat me a lot differently, mostly by staying away, because they find it too uncomfortable or “too real” to want to talk about the facts of illness and death being a big part of your life.

I guess seeing how this sort of life event ripples in such drastic negative ways, it’s important to focus on the positives however you can and realise that no matter what. You aren’t alone. And if anything, I have forged wonderfully honest friendships based on people having experienced similar situations of loss or struggle. Those who now see how fragile life is and appreciate how things can change in a click of a finger. Having struggled with social anxiety my whole life, there is now nothing more beautiful to feel than the trusting relationship with a friend that you can confide in or pass the time with.

[Charlene Marshall]

Hi Katie,

Thanks so much for writing and for sharing your thoughts on this topic. I know it isn’t an easy one to discuss, especially since everyone has such varying degrees of different opinions when it comes to friendships/relationships/support and chronic illness. Like you and your Dad, I didn’t find the support group I was supposed to attend helpful either. I am so thankful for this platform to be able to discuss the things on my mind, and everyone on here is so respectful and truly “gets it”. You’d think people in a PF support group would also get it, but there was a huge difference in how I felt supported there vs. on here. Just grateful this community exists!

So sorry to hear about the loss of your friend throughout your Dad’s illness, that is awful. Unfortunately chronic illness does illuminate for us who our true friends are, and I’ve lost a few close friends along the way too. It’s so hard, because they don’t intentionally walk away but inevitably our friendships change and it broke my heart when it happened to me at first. I can imagine it felt the same for you?

I love how you phrased that Katie, the last sentence of your post. It’s so important to feel that way with people, and isn’t it interesting to feel so secure and comforted in a friendship where you’ve never met the person? I totally feel that way too with so many people on this forum. I appreciate those who now appreciate what I do: how precious life is, and how materialistic/minuscule things just aren’t important in the grand scheme of life.
Thanks as always for writing, I love hearing from you!

Charlene.