To Succeed, I Must Share My IPF Identity With Others

To Succeed, I Must Share My IPF Identity With Others
4.5
(13)

I write a lot about the importance of person-first language and illuminating the identities that make me who I am. I often point out that my diagnosis of idiopathic pulmonary fibrosis (IPF) is just one part of me.

In narrative therapy, we call these our preferred identities, a term in which others maintain their characteristics and strengths at the forefront of a problem they might be facing. Applied to the context of my life, IPF is the problem, and my preferred identities include a long list of titles other than “IPF patient.”

While I advocate for living with IPF and am proud about being able to do things like traveling and snorkeling, I am not naive about the help I need at times due to this life-threatening lung disease. Learning to ask for help has been one of the hardest parts of having IPF, and I haven’t mastered it yet, despite having this diagnosis more than four years.

I tend to alternate between being too stubborn to ask for help — secretly fearful that if I do, my ability to be independent will be compromised — and reluctantly asking because I need to. This pendulum swing occurs often. I believe it’s because of the varied responses I get when I do ask for help, especially when I am not wearing my supplemental oxygen and my lung disease is invisible to others.

Last fall, I asked members of the Pulmonary Fibrosis News Forums whether they identified with being disabled as a result of their IPF diagnosis. Some felt this disease did disable them from what they were previously capable of doing, while others did not.

When I was first diagnosed, I did not want anyone to see me differently. Even when I was short of breath, I tried to get by without using my oxygen, because I did not identify with being disabled and didn’t want others to see the crippling effect this disease can have on someone who was previously healthy, active, and independent. However, I have now shifted what I want others to know about my lung disease and am asking them to acknowledge it.

While it still feels uncomfortable to reveal my diagnosis to new people, I’ve discovered that sharing this information makes it easier to interact with them in the long term. When I tell others about my lung disease and explain what it is, we can work together on accommodations that can help me succeed.

Especially in the context of work, this disease causes limitations such as fatigue or brain fog. Asking others to acknowledge my lung disease, whether or not it is visible to them, allows my employer and me to work out accommodations to help me excel at my job. I still don’t identify as being disabled, but I do accept that I have disabilities as a result of this cruel lung disease, and there is no point in fighting it.

It has taken me years to reframe my thoughts from not wanting others to know about my disease to sharing it with them in open conversation. I want them to acknowledge that “patient with IPF” is just one of my identities now, but not a preferred one. Many other identities in my life are far more important.

However, because IPF has no cure apart from lung transplantation, which arguably is not a cure, “patient with IPF” is likely an identity I will have for years. As a result, asking others to see my disability as a result of IPF is important for my overall success.

I would advise creating boundaries about discussing an illness or disability. Because I was diagnosed with IPF so young, people are curious about what it might mean for my future. Because I am uncertain and have a difficult time discussing it, I try to place boundaries on answering these types of questions.

When I do this, most people are understanding. I explain that I share my experiences to help me succeed or provide ways they can help me. For example, several workers at my local grocery store know of my lung disease and now help me with my groceries when needed. This is just one situation in which acknowledging my disability and asking others to do the same enables me to receive the help I need or the accommodations required to be successful.

***

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!
Latest Posts
  • exercise, power outages, productivity
  • exercise, power outages, productivity
  • exercise, power outages, productivity
  • exercise, power outages, productivity

How useful was this post?

Click on a star to rate it!

Average rating 4.5 / 5. Vote count: 13

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

6 comments

  1. Leah says:

    Hi. Im Leah, my chest xray says “fibrosis considered, both upper lungs” on June 17, 2020. Only this first week of June, I get persistent cough, sometimes tight chest and upper back pain. The doctor gave me medicines Levofloxacin, azithromtcin, n-acetylcysteine, levocetirizine and ascorbic acid. From my previous chest xray 3yrs ago, and other previous chest xray/s, are all normal. I have no history of tb or pneumonia. I dont know how i get the fibrosis. But ever since, my sense of smell is so strong that made me so sensitive and feel uncomfortable.

    • Charlene Marshall says:

      Hi Leah,

      Thank you for reading my columns and reaching out via the comments. That said, I am so sorry to hear about the possible fibrosis in your lungs following your latest chest x-ray. Like you, I had no history of TB, pneumonia or even any recurrent chest infections. I was a very healthy child, and my diagnosis is “idiopathic” which essentially just means they don’t know what caused it. This can be very hard to accept. Did the doctor refer you to a specialist/Pulmonologist? If not, you can always advocate that he/she does so you can find out more. Feel free to write any time, I know how confusing this whole experience can be. Hang in there!
      Charlene.

  2. M C Butler says:

    Dear Charlene, I read your comments regularly and get much comfort from your very courageous attitude. I have had IPF about four years, but unlike you I am 85 and gasping.
    I am on O2 24/7 now and can rarely get out. I suffer from an underlying sickness caused I’m told by hyperventilating. Any ideas to counteract this debilitating symptom. It really does prevent progress especially exercising. Any. Suggestions? Much appreciated!
    Very best wishes to you and your encouraging emails.
    Marlene
    .

    • Charlene Marshall says:

      Hi Marlene,

      Thank you so much for reading my columns and reaching out via the comments. So sorry to hear of the struggles associated with your IPF, this disease can be so cruel can’t it? Hmm, I suppose knowing how to counteract the symptom will depend on the cause. Is the hyperventilating due to being anxious or over exerted, or would you describe it as something you do due to the condition of your lungs? It may be something to speak with Dr. Noah Greenspan about, he may be able to give you some exercise tips and help you manage the breathlessness. You can find more about his program and who he is at: https://www.pulmonarywellness.com/ I’d only really have my experience to share, as I am not otherwise qualified to guess what might help unfortunately. However, Noah may be able to help you! Feel free to write any time and keep in touch 🙂
      Charlene.

  3. Marlene says:

    Many thanks Charlene for your comments. I’ll try and contact Dr Greenspan and look forward to his advice (if I manage a connection!). I’m not as sharp as I use to be! The condition follows too much exertion the previous day I think. Thanks again for trying to. help…..just delighted I managed to contact you. Keep on with your blog it really is a big help. Very best.

    • Charlene Marshall says:

      Hi Marlene,

      Thank you so much for reading my columns and reaching out via the comments. Yes, let me know if you have trouble connecting with Dr. Greenspan and I can help with that if need be 🙂 Thanks so much for the kind words, feel free to reach out anytime. I’m always here to help!
      Take care,
      Charlene.

Leave a Comment

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