I Can’t Help Feeling Like a Burden

I Can’t Help Feeling Like a Burden

younger than 30

I’ve experienced increased sensitivity to comments, gestures, or unusual behavior from others since my IPF diagnosis. Sometimes this is attributed to the medications I take for the management of my disease, such as high doses of steroids. At other times, I feel increasingly sensitive because I am aware of how much my disease impacts those around me. What hurts the most is that there is nothing I can do about it.

Lately, I am feeling like more of a burden than usual. It is not uncommon for me to feel like a burden on others since my diagnosis, but sometimes those feelings are manageable. At other times, the thought of being a burden is overwhelming. However, the harsh reality is that I need help with some tasks because my disease is trying to steal my breath. I recognize that this isn’t other people’s fault, but it isn’t my fault either. I try hard to subdue my thoughts that tell me I am a burden on others, but this isn’t easy, especially when I feel increasingly sensitive to behaviors that seem to mirror how I feel.

Perhaps I am just reading too far into it, but three scenarios recently occurred that made me feel that I am a burden to others. I know that assuming does no one any good. However, I can’t help how I feel, and I don’t have the energy to check out my feelings with others right now.

Following are the scenarios that have left me feeling a bit vulnerable and like a burden to those around me.

  • A 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. I want to continue to work and feel like I deserve this right. I also know the flexibility and adaptations required for 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 my medical problems as well, but I can’t help it.
  • Requesting help from others: As a general rule, this stinks, and I really hate having to ask for help. But I do need it occasionally. I know that everyone is entitled to their own time and can’t always help me — I understand that. However, when my support network is unavailable, it leaves me in an extremely vulnerable and frustrating position. I’m curious to hear from others: When your support networks are unavailable and you need assistance, what do you do? 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 quickly becomes overwhelming.
  • Being unable to commit to social events: My ability to attend social events is completely dependent on how my lungs are doing. I can’t always be there when I say I will if I am having a difficult respiratory day. I feel like a burden when I cannot follow through with social commitments, because sometimes people depend on me to be there for things like a volunteer position, leading an event, etc.

Today I am sad, and feeling like a burden. I don’t know what would help me feel better, and perhaps I just need to “sit” in this feeling for a little while.

Do you ever feel this way as a patient living with IPF? Join the discussion in the Pulmonary Fibrosis News Forums here.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

2 comments

  1. Dania Parisé says:

    vous avez entendu parler du traitement par le sang,,,cellules souches aux Etats-Unis,,,,,différents commentaires, des positifs et des négatifs

    • Charlene Marshall says:

      J’ai entendu parler des essais sur les cellules souches aux États-Unis, grâce à Dania. Cependant, je ne sais pas grand-chose à leur sujet, il est important que les patients fassent leurs propres recherches sur eux et qu’ils soient ou non bénéfiques pour leur maladie.
      Je vous envoie mes meilleurs vœux!
      Cordialement, Charlene.

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