To Succeed, I Must Share My IPF Identity With Others

Charlene Marshall avatar

by Charlene Marshall |

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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.

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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.

Comments

Leah avatar

Leah

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.

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Charlene Marshall avatar

Charlene Marshall

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.

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M C Butler avatar

M C Butler

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
.

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Charlene Marshall avatar

Charlene Marshall

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.

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Marlene avatar

Marlene

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.

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Charlene Marshall avatar

Charlene Marshall

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.

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Shaw Jennings avatar

Shaw Jennings

Hi Charlene,

You may or may not recall that we have exchanged a few messages the past few years and your responses to my comments and the many that you have made to others have convinced me that you are incredibly thoughtful and wise beyond your years, so I will respect whatever you might say about this posting.

I was diagnosed nearly 4 years back. My diagnois was caught early so to this day I am doing fairly well with SOB being my only symptom. When I was initially diagnosed I had severe bronchitis. I guess the bronchitis was a godsend as it lead to my early diagnosis. Nonetheless, I got the same disturbing speech that most of us received "median life expectancy of 3 to 5 years". Of the many things that crossed my mind following my troubling diagnosis, was who do I tell and what do I say. I initially thought I should tell everyone in my family and my closest friends, which I proceeded to do, but after making most of my calls I begin to think it may be premature as the responses to my news was mixed and awkward. I then decided - for the time being - I would keep the news about my disease to myself, so I was not telling new aquaintences.

About 3 years ago my wife and I downsized and moved into a senior community where we made many new friends and attended numerous community functions. We were very excited about our new friends and increased social life. Then the Pandemic hit and changed everything. We stayed at home and made little contact with just about everyone. Now that the Pandemic is easing we have been asked to attend some new activities and events, which I have declined with the simple response that I have a breathing issue and my doctor has cautioned me to not have close contact with others.

In recent weeks, we noticed a couple of parties on our street that we were not invited to. And most recently a couple that we consider fairly good friends had a party that we also didn't receive an invitation. In recent months I delcined to attend a couple of their inviations to lesser events.

I am not looking for social guideance, but I am wondering should I have been more forthcoming about my illness and possibly have offered up some guidelines on what I can and can't do? Maybe the reason we were not invited was for some other reason, but I am now wondering what is the best way to deal with my awkward health news and what might have been better to say?

Shaw Jennings

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Charlene Marshall avatar

Charlene Marshall

Hi Shaw,

Thank you so much for reading my columns and reaching out via the comments, though I'm really sorry you're having to navigate this social difficulty with friends. It feels like the social implications of the disease can sometimes be the hardest on us - or that is how I feel some days anyways! I'm sorry you're dealing with this, and I do think you made the right decision in the beginning to protect yourself from the virus as the pandemic hit... that is so important for those of us with breathing issues!

Like you, I struggled to share my diagnosis with others at first; I was worried what they would think and/or that they would treat me differently. And some did; it was like some couldn't cope and strayed away from me but others stepped up in ways I didn't even know would be helpful. I'm not sure how beneficial my advice is, but I truly believe we have enough on our plate to also have to navigate how others' respond to our disease. I now put it out there very generically: I say I have a lung disease, sometimes name it, and let them ask questions as they feel they need to. Sometimes people are curious and want to know more, and other times they don't. Then I just let the cards fall in terms of how much time we spend together. Does this help at all? I'm wondering if your friends who haven't extended an invite are actually trying to avoid you being in a position of having to decline - like are they trying to proactively respect your need to protect yourself due to IPF and waiting for you to let them know that you feel more comfortable now that pandemic restrictions are easing? Just another perspective to consider.

Please let me know how things shake out and I'm sorry again you're having to navigate this, it is never easy. As always, feel free to connect anytime.
Charlene.

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