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Voicing Vulnerability: What I’m Scared of as a PF Patient
As a patient living with idiopathic pulmonary fibrosis (IPF), there are many things I am scared of. However, part of me believes that it is my responsibility to show resilience, bravery and “no-fear” around those who love me most, such as my friends and family members in order to protect them from the cruel realities of IPF. Secretly, I think they know how this life-threatening lung disease is going to affect my future, but if I don’t voice fear or concern surrounding that, then it is a topic that goes unaddressed which makes everyone feel better.
Is this the best approach to coping with my fatal lung disease? Probably not. And, just because I show the side of me that isn’t scared of my disease, doesn’t mean that I’m not petrified of certain things that are related to my illness. I am, and I am thankful to have this platform to “voice” (ie. write) them down on, while being among an audience who truly understands the fear of living with IPF.
There is a lot of vulnerability that comes with voicing my fears about my illness, however, there is also a lot of strength, inspiration and comfort that others can draw from being authentic about your fears. Living with a life-threatening illness is scary, and there is no shame in admitting that.
Unfortunately I am well aware of the reality that this disease is likely going to end my life far sooner than I would die without a chronic illness. While I try to push that aside, and focus each day on living as best I can with the time I have, sometimes we need to address the very real fears that bottle up inside of us. As a young adult living with IPF, here are some of the things I am scared of as a result of my disease:
- My impending death: even post lung transplant, there are complications and infections that often cause patients to experience a premature death. There are lots of people who get many good years with their illness, and post-transplant but the harsh and scary reality is that most don’t. Here’s the thing: I’m really not afraid of dying. Everyone is going to die; it is part of the great circle of life. I am however, scared of dying from this disease. I’ve heard far too many horror stories of people losing their life to IPF and what their final moments are like when they cannot breathe. This is what I don’t want to experience, and am terrified of.
- The uncertainty of my future: living with a chronic illness makes everything seem so uncertain. Do we plan a wedding? Start a family? Spend my ‘healthy’ days travelling and seeing the world? These are all things that someone who is healthy wouldn’t have to question and they could just build into their adult lives. However, living with a chronic illness changes that and the uncertainty can be really scary, especially when you don’t know what each year will bring
- Leaving my dog behind: I can’t elaborate on this too much without crying because this is one of my biggest fears. I don’t ever want her to wonder where I’ve gone, or be sad that I’ve purposely left her. My golden retriever is my world, and one of my greatest fears is her feeling like I abandoned her.
What are some things you are scared of as a result of your IPF/PF diagnosis? If you feel this is a safe space to share your fears, then I’d invite you to let us know.
Warmest regards,
Charlene. -
8 Replies
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Hi Charlene
Although I think I can identify with some of your fears regarding this disease I must also say that I’m much older (72) than you so I can’t really say I know how you feel. Although Ive convinced myself I don’t fear death I have to admit I sometimes have a certain amount of uncertainty. Im pretty sure this uncertainty at times is perfectly normal. I was diagnosed a little over two months ago but i didn’t tell my wife about IPF until about a week ago. Although I’m sure she had a clue when I received my oxygen tanks and concentrator I let her think my COPD was just getting worse. My biggest concern with telling anyone was I guess I didn’t want anyone to feel burned but also I don’t want to be treated any differently than before. I also had just gotten over Valley Fever, a fungal disease which infects the lungs and has really nasty side effects, and didn’t want to disappoint her from thinking I was on my way back to being the “old Mike” as she had put,up a lot with me during the 18 months it took for the disease to go “dormant”(there is no cure). I told my daughter about the IPF a couple days ago but it was easier telling her if only because of the type of person she is, meaning we had spoken about previously the inevitability of “the circle of life” which includes everyone’s eventual death. We also have a dog and like you I feel badly when I think about leaving,him behind although I feel that, like people whe they lose a pet, he will adapt with time. I think pets are much more astute about the circle of life than we have given them credit. As always, I wish you and everyone on this forum my very best and thank you for giving us all a place to express our true feelings. You must be a very special kind of person.
Michael Lamkin
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Hi Michael,
Thank you so much for taking the time to reply to such a sensitive topic. This forum post was tough for me to write, and I appreciate any/all responses back regarding fears following an IPF/PF diagnosis. I believe that regardless of age, this disease creates equal and similar fears among all of its “victims” (although I try not to identify as a victim). Even more so, the uncertainty of anything is definitely scary and the most uncertain thing in this world I think is the dying process and what happens after death. I think it would be unusual not to be scared, even a little. I also try to convince myself that I am not scared of dying but when I really think about it, I definitely have some fears. Mostly though, I think that fear stems of the impact my death is going to leave behind on family and friends.
Is your wife still taking your diagnosis better than expected? I know that was hard for you to share with her, but so important so you can support one another together.
I absolutely agree about not wanting to feel like a burden. Even two years post-diagnosis, I really struggle with this sometimes and choose not to tell people about my illness or details of it (ie. my really bad days where I am short of breath) because I don’t want to ‘burden them’. However, then I resent them for that or get mad that they aren’t there to support me, but they can’t be unless I am open and honest with them. This is a mental and emotional struggle that I pull myself through all the time! In order to avoid this feeling, I’d encourage you to set aside the feeling of being burdensome. It is so hard to do, but important for our own mental health. As for not wanting to be treated differently, I can also relate to that my friend. This disease is just so cruel and unfair, isn’t it?
The good thing to remember, and this is something I intentionally try to remind myself of is that no one knows when our ‘expiry date’ will be. Doctors can predict it sure, and while they might be right from time to time based on others’ experiences, they aren’t certain for us and thus, we could live a lot longer than anyone expects. It sounds so cliche, but living each day like it is our last really is important. Hopefully you get many, many more years with your wife, daughter, dog and others that are important to you Michael. We’re always here if you need to vent though, as I truly understand what it is like to live with this disease and all the emotions associated with it. I actually have a column being published today about how “surviving” IPF is so much more than just the physical aspects….stay tuned for it!
I’m so glad you’re part of our forums Michael, it really is a special group of people! Just an FYI: if you get a chance, fill out our poll on support groups which was just posted this morning. I am collecting data about running a virtual support group for all our forum members. The poll can be taken by following this link: https://pulmonaryfibrosisnews.com/forums/forums/topic/patient-support-group-poll-2/
Take care, and write any time!
Cheers,
Charlene.
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Hi Charlene I too have tried not to show fear, what I fear is how it’s going to end will it be not being able to breath,a stroke, or could it be lung cancer. There is no best way.
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Hi Sheila,
Thanks so much for taking the time to reply to this post, I know it isn’t an easy topic to discuss. I appreciate the vulnerability others are enduring to answer my questions about fears, because I know even though we try to be strong, that we all have those fears sometimes. Like you, I fear that there is no way this disease will end “well” for us. I know hospice/palliative care is getting better and better, but that is when the situation is predictable (ie. the death is somewhat suspected) and we all know this disease has much predictability. Anyways, a tough topic to think about, but do know that I can relate to your fears and the questions of how it might look in the end. Here for you if ever needed to vent about that.
Hang in there!
Charlene. -
Hi Charlene,
I’m very scared of this disease and there are days I tell myself not to be afraid to die and other days when I think about it I’m horrified when the end comes I won’t be able to breathe and it will be very painful.
i cannot discuss my feeling about dying with my husband and daughters. They say that should never ever cross my lips. Just put my trust in God because he has everything under control. So I have no one to share my feeling with. Even my best girlfriend doesn’t want to hear anything about my end because she too feel that God will take care of everything and I should have faith. Thank God I can share it on this PF forum. Thank you so much.
Warm regards
Delores
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Hi Delores,
Thanks so much for writing – it is great to hear from you, as always! I hope you’re doing as well as possible.
Thanks also for being willing to show vulnerability and discuss this topic with me. I know it isn’t easy to talk about it, and a hard thing to think about. Like you, I try to tell myself that I am not afraid of dying, but I think with any uncertainty does come with fear too. I think more than anything it is death by IPF that I am more scared of. The feeling of not being able to breathe is so scary and anxiety-provoking!
There is still such a stigma with some beliefs or people when it comes to talking about death and dying. Perhaps because it is what my education is grounded in, I am more comfortable talking about it than others but it is also because I believe/know it is part of everyone’s life. I’m really sorry to hear that you’re unable to talk about it with your daughters and husband, especially if you’re feeling the need to. I think it is important to have faith and hope too, but also that you get a platform to talk about what the end might look like for us. I can accept talking about this, so please know you can connect with me about it any time. I know it isn’t pleasant to talk about, but I do believe it is important and realistic too for us to want to talk about or voice fears about.
Take care and write any time. Thinking of you!
Charlene.
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I am not scared of death jus the way I am going to die and actually hope that one of the side effects gets there first. I am living alone and have CPFE plus SS so know I haven’t got that long even if I do beat the time frame set for someone with the three diseases at once. I have made arrangements for my rescue dogs, luckily now only three of them, had eight last year but old age and illness caught up with them. The three left are long lived breeds so have made arrangements for them to go to people that know how to look after dogs with problems from their past, my personal little life saver will go to my daughter as they know each other well. The other two are also well catered for, and will take a substantial **dowery** for their medical care with them, not that the people who are adopting them know that yet. Living abroad I have had to make other necessary provisions against the tax man. Luckily I know the law as I protected myself before my husband died (of the same disease complicated by small cell cancer). So yes I do know what I am in for but I am not the worrying type, just like to get everything in order and now I can relax about it.
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Hi Susan,
Thanks for your reply, and for getting back to me: it is nice to hear from you!
This is a really tough topic to talk about so I appreciate your honesty and vulnerability in sharing. I do hope you far exceed the life expectancy of this illness as well. So glad you have the attitude you do in facing this disease head on – kudos to you!
Kind regards,
Charlene.
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