I Don’t Always Have an Answer for ‘What’s Wrong?’

I Don’t Always Have an Answer for ‘What’s Wrong?’

younger than 30
I have experienced a whirlwind of emotions, good and bad, since being diagnosed with IPF. Sometimes I feel these emotions randomly, and other times they are attributed to how my day has gone overall.

For example, if I have had a good day physically when my breathing is not too difficult and my pain is under control, I usually don’t feel overly emotional. On the flip side, if I have a more difficult day my emotions can be out of control. That’s especially true on days when something like humidity makes breathing harder, or when I try to do too much physically and pay for it by having to rest.

Usually I can link my feelings to a certain reason, however, that has not been the case as of late. It feels as if more often than not, I am teary, fatigued and, as a result, I often am very frustrated. When people see me upset and ask, “What’s wrong?” I can only imagine how confusing it must be to others when my answer is “I don’t know why I am upset!” It causes me confusion as well. I wish I knew what has been wrong lately, or what is causing my tears. But I don’t, and as a result, I don’t know what the solution is or what I need to feel better.

Usually it is my colleagues (who, are amazing if you haven’t gathered that from my previous columns) who take the brunt of my emotions, since we are together everyday. They have come to accept and support me through whichever emotion it is that I am feeling that day, and I couldn’t be more grateful for that. They are patient, understanding and generous with their time and resources. Overall, they are just remarkable human beings.

They have made exceptional efforts to try to cheer me up during down days, or spend time with me when I am feeling sad. They have given up their time to spend evenings with me, lend a listening ear and tried to solve issues with me when they become overwhelming.

One thing they have mastered through supporting me is their ability not to need to understand what’s wrong, and still be present with me as I work through all the emotions associated with living with IPF. And — I think this has been the most precious gift of all — not to need an answer to “what’s wrong” when I am feeling sad. They have come to accept and understand that often I don’t know what is wrong. When I shrug my shoulders through tears when they ask if I am okay, they usually know I am not okay — and they remain present anyway.

I think this is something that has taken them a little while to learn, and not without the confusion of my own inability to understand why I might feel upset or sad. However, for me as the patient, this has been invaluable. I chose to write this column in hopes of helping others who are caregiving for someone with IPF.

I hope this can help more caregivers understand that we may experience many different emotions that are often based on specific situations. However, when we have difficult days emotionally, we may not understand why we feel upset or have an answer to your question of “What’s wrong?” I understand that may leave you feeling helpless, frustrated even or confused, but please still be present with us.Even during the times when we don’t know why we are upset, your presence makes the world of difference, and being patient with our emotions is one of the best ways you can help us.

There have been many times lately when I have tried to give an answer for “What is wrong?”, being left to feel only frustrated that each reason I give isn’t usually why I feel the way I do. I have come to realize that sometimes I just don’t have an answer for how I am feeling, and thanks to my colleagues, I also have come to accept that that is okay.

This is just one of the many gifts they have given me throughout this journey with IPF, and I am, once again, so grateful they are in my life.

***

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!
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2 comments

  1. Diane Kieffer says:

    How does one afford Ofev-Esbriet? Husband age 87 recently diagnosed with Idiopathic Pulmonary Fibrosis. How does someone on Social Security afford these drugs? Is this something only the rich can afford?

  2. Ron Cade says:

    I hope this helps. Ask for financial help at the doctors office. I am a patient at UT Southwestern, Dallas. They offered me papers for financial info after I chose Esbriet. I’m on Medicare with a supplement. My co pay is $20 a month.

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