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    • #13038

      This is a hard topic for me to write about, as it has been one that I’ve struggled with on many occasions since my own diagnosis of idiopathic pulmonary fibrosis (IPF) in April 2016. I try so hard to tell my mind that others don’t see me as a burden due to my illness, but sometimes the thought (and fears) that I am a burden on my friends and family overwhelms me.

      Today I am sad, and feeling frustrated. There have been a few instances in the past weeks that have left me feeling as though I am a burden on others. I am not afraid to admit that I may have been reading into these situations a bit too much, and assuming the worst, but sometimes living with a life-threatening illness such as IPF causes you to think all sorts of things! Based on things that have happened, I can’t help but feel like a burden on others and this is hard to admit. Here is an example of two different scenarios which have left me feeling like a burden. Perhaps you can contribute your thoughts on whether you think my feelings are valid, or maybe I am assuming too much?

       

      • Burden at work: I am well aware that working with a life-threatening illness such as IPF is not ideal. It requires constant flexibility and adaptations to my role based on my current abilities or lung function. That being said, I want to continue to work and feel like I deserve this right. I also know the flexibility and adaptations required to my role take a toll on other members of my team and my Manager. Since I’ve had so many fluctuations in my abilities, it sometimes feels as though others are sick of dealing with my health issues. I don’t blame them, I am sick of them as well, but I can’t help it. Therefore, when others don’t check in, or do not respond to e-mails where I am trying to be transparent about my illness by providing updates, it feels as though I am a burden. I think this because I am taking up more time and mental energy than other staff are. Other members of my team who can come in able-bodied, do their jobs without any crisis and don’t require any special accommodation or discussion sometimes seem like a preferable employee compared to all of my needs.
      • Burden on others: as a general rule, this stinks and I really hate having to ask for help but I need it occasionally and there is nothing I can do about it. I know that everyone is entitled to their own time, and cannot always help me, I completely understand that. However, when my support network is unavailable to help me, it leaves me both in an extremely vulnerable and frustrating position because I don’t have the choice to not need help. I’m curious to hear from others: when your support networks are unavailable and you need assistance, what do you do? Patients can’t help but need support from others so this is something I regularly struggle with. Perhaps a solution is to expand my support network to have more people to ask for help, although this still cannot guarantee that they will be available. When I gather enough courage to ask and no one is available, the feeling of being a burden becomes overwhelming quickly.

      Have you ever felt like a burden as a result of your diagnosis of IPF/PF? How do you manage or subdue those feelings? I’d love to hear from you!

    • #13076
      Sheila Blanchard
      Participant

      Hi Charlene, I do feel like a burden on my daughter,as she has to take time off work to take me to all my Dr’s appointments. There are quite a few. We live in Caledon and as I still have my Dr’s in Mississauga where I used to live prior to my IPF it takes almost 3/4 of an hour to get there.Now with the severe sleep apnea I have to go for a fitting for which head gear I need it means I have to go overnight start at 9pm and pick up at 6am it’s a lot for my daughter to have to do and I appreciate what she does. Thanks Charlene

      • #13086

        Hi Sheila,

        Yes, I can imagine the feelings you have about being a burden/bothersome to your daughter to go to your appointments. The important thing to remember is that you’re not a burden – you didn’t ask for this disease, and you’re just trying to manage it as well as possible. You cared for her for many, many years, doing whatever it took to keep her well and I believe it is naturally part of the circle of life/caring that this role is reversed a bit, meaning she can now help care for you in return. I know it doesn’t make us feel any better though, but the bottom line is that we didn’t do anything to cause this disease for ourselves. I think it would be different if this disease was self-inflicted, or we deliberately were doing things to worsen our condition but that is certainly not the case. Be gentle with yourself and remind yourself often that this isn’t your fault…

        Also, I know where Caledon and Missisauga are! I am not that far from you actually, we should get together and grab a coffee or tea sometime. Would you be up for that if I can coordinate it? I drive so I can likely get to you no problem. Let me know 🙂

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