Dealing with Assumptions About My Physical Capabilities
When I engage with the pulmonary fibrosis (PF) community online, I frequently hear about the difficulties of living with an invisible illness. Sometimes it feels nearly impossible to convey my experience of living with this chronic lung condition, which is characterized by progressive scarring of the lungs, shortness of breath, and extreme fatigue. Those closest to me try their best to understand the exhaustion associated with poor lung function, but they can’t fully comprehend it.
Many of my friends and family members offer assistance with tasks such as loading and unloading the car, walking my dog, and shopping for groceries. My lung function is about half that of a healthy adult, but unless I’m using my supplemental oxygen, I look capable of doing these things on my own.
Since my diagnosis with the idiopathic form of PF a little over three years ago, I’ve experienced many situations where people made assumptions about my capabilities based on my appearance. When disclosing that I need help with particular tasks, I become emotional. Because I am a young adult, I often feel that I should justify why I need assistance, especially when I’m in public environments such as airports or shopping malls.
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When I’m wearing my supplemental oxygen, attitudes toward my physical capabilities are drastically different, and I receive offers of assistance even when I don’t need help. My friends and family understand my limitations now. However, strangers make assumptions based on my age and appearance. Little do they know that these activities have become extremely difficult for me since my diagnosis:
- Climbing stairs: I’m sure that most people living with IPF would agree that this task becomes incredibly challenging as their disease progresses. While I can still manage stairs, I have to stop several times on the way up to catch my breath, so I prefer to take an elevator or escalator to save my energy. I am unable to climb stairs if I’m carrying heavy items. I also need time to take breaks, so multiple flights are impossible when I am in a rush.
- Talking while walking: When I am sightseeing or shopping with friends, I become extremely breathless within minutes when I try to carry on a conversation even when we’re walking at a leisurely pace. I wrote about my increased breathlessness in a recent column.
- Carrying heavy items: When I am shopping at a large department store, I always take up offers of help with large items. However, it is harder to ask for assistance at smaller locations, such as a grocery store. My requests for help are often met with disapproving looks, and I fear that people assume I’m lazy.
- Staying up late: I am notorious for staying up into the wee hours of the morning with my girlfriends, talking while enjoying a glass of wine. However, as my IPF progresses and my fatigue worsens, I can no longer stay up late if I have to get up early or have a busy schedule the next day. I need a full night’s sleep to ensure that I can function. Unfortunately, I believe that my late nights are coming to an end until after I receive a transplant.
- Standing in one spot: As readers might know, I’ve recently returned from a vacation in Hawaii. While traveling through airports, I noticed that I have difficulty standing in lines for extended periods. My muscles cramp and my joints ache. The pain is particularly severe in my feet, which tend to swell. I try to avoid standing still while waiting in a line by shuffling back and forth.
Do others make assumptions about your physical capabilities as a patient with IPF/PF?
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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.
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Comments
Rune
Always interested in your writings. Has been wondering for some time about you getting a lung transplant, and it sounds like you are waiting for that to happen. Wish you the best and good luck!
Charlene Marshall
Hi Rune,
Thank you so much for reading my columns and getting in touch via the comments. So nice to hear from you, and yes you're correct: transplant is in my future. Thank you for the well wishes, I so appreciate them. Wishing you nothing but the best also!
Charlene.
Maureen Terhune
Charlene, this is just what I needed to hear today. I know exactly what you mean as I have been worrying about it for the past few days, ever since someone remarked how well I looked even though I had to leave a music practice just before the end because of exhaustion. It's way beyond "feeling tired" isn't it?
I have NSIP and am currently being treated with Prednisone and Azathioprine and these drugs are working for me. But there are many side-effects, the major one being early awakenings. So I need to get to bed early and I have found going to bed late doesn't mean I wake up later in the morning. So, you work with what you have and I try to get to bed really early most of the time. Luckily I have a really understanding and supportive husband.
But like you (and I am much older!) I feel that I have to justify not being able to manage things when with people other than my husband. I suspect that my round cheeks (from the steroids) now make me look fairly healthy, but those of you on the forum who have taken Prednisone will know that appearances are deceptive.
And the stairs... I can and do walk up them, but with stops as needed. But the sight of a long flight of stairs can fill me with dismay.
Charlene, I have been reading your articles for some time, and they are an inspiration. I was so excited that you got to Hawaii.
Thank you for your helpful articles and in particular for this one. Take good care of yourself. Maureen
Charlene Marshall
Hi Maureen,
Thank you so much for reading my columns and for all of your kind words, I so appreciate them. In fact, they really lifted my spirits tonight as I struggle with some wicked fatigue and exhaustion. You're absolutely right, this disease is so much more than just being "tired" or short of breath. I describe it as crippling, debilitating, etc. Although I wish none of us had to understand what living with this disease was like, I take comfort in the fact that others out there "get it".
I'm so glad you have a supportive husband, and I like what you said: you work with what you have. This is so important to remember, you are correct. I will send lots of prayers that the medications you're on continue to be effective for you. The looks of IPF/NSIP and many other lung diseases are so deceptive, you're right, and they rarely tell the whole story. Justifying our needs to others can be so difficult.
I'm so glad my columns resonate with you - it is such a privilege to write for PF News! Thank you for your kind words about Hawaii too, it was a trip of a lifetime and I loved every moment.
Kindest regards and feel free to write anytime Maureen. Sending much love your way!
Charlene.
Fred Schick
Your posting is an excellent description of the daily travails of IPF. Unlike you, I am an old guy, but the frustrations are the same. Thank you for sharing your story and best wishes for outliving the averages.
Charlene Marshall
Hi Fred,
Thank you so much for reading my columns and for your kind words. I'm glad my writings are accurate in their descriptions of how difficult it is to live with this disease. I think it is so important that we help others understand to the best of our abilities. I appreciate your kind words and sending best wishes back to you.
Charlene.
Hans Fink
Hello Charlene,
You do an outstanding job in moderating & maintaining these IPF forums. Thank you very much,
Like you I was diagnosed with IPF in late 2018 & am controlling this condition with the "OFEV" medication. I also supplement with the Chinese herbs from the Wei Laboratories. Like other IPF patients, I cna only report positive results so far.
I understand that you are from the south-western Ontario region. Would you consider to attend an IPF support group meeting sometime? We meet once a month in Blenheim & would welcome your participation greatly.
All the best to you in your struggles with IPF.
Sincerely,
Hans Fink
Charlene Marshall
Hi Hans,
Thank you so much for reading my columns and reaching out via the comments. It is such a privilege to be involved in the forums, and writing for PF News. While I never imagined this disease being part of my life, I am so grateful for the community that it has built up around me. I'm glad to hear you're finding the Wei herbs effective, I have heard a lot of food things about this and hope it continues to be effective for you. Are you tolerating the Ofev well? Let's chat more about the support group in Blenheim... I think that is still quite far from me, but it may be do-able. One thing I learnt from the Summit is just how much I benefit from connecting with other patients in person and hearing their stories. Feel free to email me more details about the support group: [email protected].
Kindest regards,
Charlene.
Malcolm Mann
Hi Charlene
Although I dont quite fit in the <30 age group you described my symptoms perfectly, particuarly the standing in one spot. We attended the remembrance day ceremony here yesterday, there wern't enough chairs, an old digger offered Jan his seat, I volunteered to stand and was breathless the whole time.
I find walking on the flat no problem (560 metres 6 min walk test) but put in a head wind or a hill and my speed drops to the snail like.
As this insidious disease progresses I find I have to consider dropping longstanding activities, but my ocean swimming persists, each Sunday the local surf club has a beautiful 1.5km ocean swim, last week there were a good few who finished behind me.
After your Hawaii trip you'll have to come to Australianext, there's a spare bed here, no stairs.
Cheers
Mal
Charlene Marshall
Hi Mal,
So nice to hear from you, thanks for connecting and reading my columns. Isn't it interesting how standing in one spot, though not exerting ourselves, has become difficult? This is something I avoid doing now, because like you, I am breathless and develop pain in my joints/muscles if I stand still in one spot too long. Your 6 minute walk test distance is excellent, kudos to you! I hope you can continue to do some longstanding activities, as I know the realities of this cruel disease are so tough. Glad you can still do the ocean swim! When I was in Hawaii last month, I noticed a difference in my breathing when I was oceanside. I loved being in the salt water, glad you can keep this up!
Australia is on my list for 2020 - I have many friends I'd like to make it down to see, I'd love to meet you too! :)
Charlene.