‘You’re Having a Pink Day!’

‘You’re Having a Pink Day!’

younger than 30

Since being diagnosed with idiopathic pulmonary fibrosis (IPF), I have crossed paths with many different people with varying responses to my disease. Because I am only 29, I am regularly reminded that being diagnosed with this disease so young is rare and, as a result, people are often unsure what to say to me or how to respond when I tell them why I use supplemental oxygen.

These many different responses from people learning about my disease cause a range of emotions. Some swerve from anger to sadness, but there’s also laughter and humor. It does take some time to get used to the responses of people just learning a young adult has a life-threatening illness. But the nice thing is you are the one who chooses how these affect you. You can either hang on to them and let people’s uncertainty and often unintentionally hurtful comments get to you, or you can shrug them off and chalk them up to not knowing what else to say. This is true not only in response to people learning about your disease, but also to statements they may make about how you look or when they are trying to relate to you.

I have been thinking about the comments I receive on a regular basis, and wanted to see if any of you can relate to the things people say when it comes to your illness. Particular comments that happen regularly, thankfully, I can laugh them off and I understand that they are well-intended.

Comments I hear mostly from people who know me well, and aren’t afraid to be honest with me, are about the color or lack of color in my face. It is not unusual for people to comment on how blue or gray my lips are at times, or for them to tell me I look pale or have no color in my cheeks. On the flip side, the people who are closest to me also like to joke when I am having a pink day, meaning I do have color in my lips and face. Because it is not frequent anymore, it usually prompts comments.

I have heard from other friends, who have had lung transplants, that the first time they look at themselves in the mirror post-transplant, they think special lighting is giving them extra color in their lips, cheeks and face. The first time I heard this, it made me laugh because it is not something I would have ever thought about. But I suppose with healthy lungs, oxygenation is much improved and color would be restored. I don’t even think twice about it anymore when people comment on my color (or lack thereof); I just giggle and respond with something sarcastic about being blue, gray or pale-looking. This often makes them laugh, too!

For those of you living with IPF, I am sure you hear often: “you look exhausted.” I hear this often, and at first it used to bother me, because I thought it was people telling me how terrible I looked. But the reality is that I do look exhausted, because I am. My disease makes me tired and that is just the way it is. People don’t make this comment to make me feel bad, so I don’t anymore. Instead, I use it as an opportunity to educate people on how exhausting IPF is and being chronically under-oxygenated really is difficult.

The comment that makes me chuckle the most comes from people’s well-intended, but awkward, attempt to relate what I have to something they have been through. People often say to me, “Oh I know what you are going through, I had bronchitis once.” I am not kidding; it happens often! This used to frustrate me, but the more I thought about it, it is human nature to want to try to relate to people. If this is what makes them feel connected to my story of living with a chronic illness at 29, then so be it. Plus, in the acute phase of their bronchitis, they likely could relate to me in the sense that they somewhat understand the difficulty of struggling to breathe. IPF and bronchitis are very different, but the desire to connect with me is admirable, so I usually have an internal chuckle and carry on with the conversation.

These are just some of the comments I hear that I choose to respond to with humor and laughter. I could write all day about others. Do you have any to share?

***

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!
×
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!

One comment

  1. Ron Cade says:

    People have asked how I’m doing. Pretty well for a guy on life support I sometimes say. Talk about a curve ball. No one expects that and I explain. . . Yeah! Without this oxygen hose, I’m outa here. It seems nobody looks at it like this but I surely do. Cheers!

Leave a Comment

Your email address will not be published. Required fields are marked *