When the Desire for Independence Backfires for Adults with IPF

When the Desire for Independence Backfires for Adults with IPF

One of my biggest fears after being diagnosed with idiopathic pulmonary fibrosis (IPF) as a young adult was losing my independence. In previous columns, I’ve talked about how I regularly participated in work and volunteer roles throughout the years, building a large network of friends and colleagues. Some described me as “the Energizer bunny” because I’d be busy from sunrise to sunset, and I loved it.

After IPF crept into my life, I was fearful that I’d lose my ability to be as fiercely independent as I had been growing up. While I am still self-reliant in many of my daily tasks, sometimes I wonder if this has worked against me as my IPF progresses.

An invisible disease

One of the most difficult things about this disease is that it is invisible. Many people have no idea how much a patient with IPF struggles to breathe. Sadly, that struggle is sometimes perceived as laziness. When I am wearing my supplemental oxygen, many people are willing to help me. It might be holding a door open, or asking to load my groceries into the cart. While these tasks are greatly appreciated, the caveat is that I don’t need this help only when I am wearing my oxygen.

When I am running errands, going to work, caring for my dog, and preparing meals, it is hard for someone to know that I could use their help. The truth is, I would always welcome a hand with any of these tasks, even on good days.

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I regularly struggle with finding a balance of wanting independence and needing assistance from others. I know that wearing my oxygen will let others know that I am feeling tired or breathless, and they are more likely to offer their help. That said, I also don’t want to wear my oxygen too often and have my lungs adjust to always having that support to breathe. My fear is that my lungs will decline faster if I always coddle them by using oxygen. The difficulty is that people think I don’t need help when I am not wearing my supplemental oxygen. Am I doing myself a disservice because others presume I am doing well and don’t need their help? It often feels this way.

Understanding the struggle

To the caregivers, friends, or family members of patients living with IPF, I wanted to write this column to help you understand the struggle many of us face with this invisible disease. We want to maintain our independence as long as possible, and we want to push our lungs to remain strong, which sometimes means not using our supplemental oxygen. It doesn’t mean we don’t need your help. We would welcome assistance with any of the tasks we’re still able to do, allowing us to conserve more of our energy.

As my disease progresses, certain tasks that I used to do have become difficult and I’ve had to learn to ask for help. Where I struggle most is wanting independence, but knowing the assumptions that I don’t need help will frustrate me. This is likely true of all patients living with IPF/PF, but I’d love to hear about your experiences.

Does your ability or desire to be independent obstruct the help you need, and otherwise might receive from others?

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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.

16 comments

  1. Sara Everett says:

    Charlene, maybe you should always wear your oxygen when you go out even if it isn’t turned on. Nobody wil know that it isn’t on and you will have the security of having in case you need it. Since I’ve gotten older, people help me all the time without my asking. I think people will be really happy to help you when they see your oxygen. Good luck.

    • Charlene Marshall says:

      Hi Sara,

      Thanks so much for writing and reading my columns. You’re right – this is a potentially easy solution, wouldn’t it be? I struggle sometimes with the weight of my oxygen, but I do usually need it and maybe people will assume I need the help as opposed to now, which is that I don’t need it when not wearing my 02. Something to consider for sure. Thanks for sharing your comments, and glad to hear others offer assistance to you!

      Kind regards,
      Charlene.

    • Charlene Marshall says:

      Hi Judy,

      Thanks for reading my columns and reaching out via the comments. I am not entirely sure if this is true, but I had heard it somewhere so I am trying to play it safe by making my lungs work a little harder, as opposed to always depending on supplemental oxygen. This is on my list of questions to ask my physician at my next visit. I’ll keep you posted 🙂
      Charlene.

  2. Marianne says:

    Charlene –
    Perhaps people don’t offer to help you because you are younger. People don’t expect people in their 20s, 30s and 40s to need or want help. They might be afraid of offending you. Just a thought. They probably think people in the 60’s and up need the help.

    Marianne

    • Charlene Marshall says:

      Hi Marianne,

      Thanks for reading my columns and getting in touch via the comments. I think you’re totally right – people assume that because I am younger, I don’t need assistance, especially when I don’t have my oxygen on. They might be afraid of offending, good point. This darned disease is so difficult to navigate, and can leave so much confusion and hurt feelings in its wake. Thanks for offering your thoughts!

      Cheers,
      Charlene.

  3. Al says:

    I would speak with my doctor about not using oxygen when required. Your body needs oxygen for its organs to function properly and lack of it could create other issues like pulmonary hypertension. Speak with your doc, mine told me to use it when I need it which is always now. Best to you!

    • Charlene Marshall says:

      Hi Al,

      Thanks for reading my columns and following up via the comments. I do hope to ask my doctor about not using the oxygen, and the potential that it becomes “dependent” on it if unnecessary. Not sure what to believe, as I’ve heard contradicting things about it. Would be interesting to compare answers of our physicians! Thanks for sharing what your doctor said, and I hope you’re doing as well as possible. Always appreciate hearing from others so thank you for reaching out!
      Charlene.

      • Al says:

        I forgot to thank you for writing this column and you’re 100% correct – others have no idea about struggling to breathe. An we don’t have to be gasping for air to feel bad and that we’re low on oxygen. So hard to explain to others. Reading and sharing helps! 🙂

        • Charlene Marshall says:

          Hi Al,

          Thank you so much for re-connecting, and especially for your kind words about my column. You really brightened my day! 🙂 I agree, people truly have no idea how much they take for granted being able to breathe, it is exhausting in every possible way – physically, mentally, emotionally – when we can’t breathe well and nothing alleviates it. I try to explain to my friends that many aliments (ie. injured leg, sore back) tend to get better with rest, or at least feel a little better but with bad lungs, not even rest helps because we have to breathe. This tends to help them understand or put it in perspective, sometimes anyways. Thanks again, glad this sharing has helped you.

          Enjoy your weekend,
          Charlene.

  4. Pat Young says:

    Good Morning Charlene, I agree just because people “can’t see” our disease they assume we are fit & healthy. Except when the coughing starts & then one gets the “stares”. But I digress about the use of supplemental oxygen. Remember if your numbers are dropping below 88 then most definitely use it as you are also possibly damaging other vital organs. It is a hard call as I too am guilty of not using it at times when perhaps I should be. That being said I don’t have my oximeter clipped to my finger 24/7 to constantly check my numbers. What surprises me is how often I am reading the number of people whose numbers are in the low 80’s & their dr hasn’t recommended the use of supplemental oxygen. If this is accurate I do not understand this at all.

    • Charlene Marshall says:

      Hi Pat,

      So nice to hear from you, thanks for writing and for reading my columns! I recently wrote a column about the stares and assumptions made when we start coughing, interesting you brought this up as it is timely to an experience I recently had. It feels as though our disease is “too” invisible if that makes sense, or too visible/heard, ie. when the coughing starts. I wonder if there is a satisfactory in between? I digress as well…

      I keep an eye on my numbers as often as I can, thanks for the reminder and I remember that the key number is 88. I agree with you re: reading how many folks don’t have supplemental oxygen despite their numbers dipping very low. That concerns me, and I always encourage folks to get a second opinion when this happens. I hope you’re doing as well as possible, thanks for writing 🙂
      Charlene.

  5. Rene Hakkenberg says:

    Hi Charlene,
    A good response to the question: is it beneficial or harmful to use oxygen when it us not absolutely needed according to O2 saturation, say above 90%. Do the lungs get spoiled and lazy or us that an old wife’s tale? I have heard contradictory answers to this question from physicians and therapists and it would be extremely useful to get a correct answer. Let us know what you find out seeing your doctor. Thanks.
    Rene

    • Charlene Marshall says:

      Hi Rene,

      So nice to hear from you, thanks for reading my columns and reaching out. I know I owe you an email too – thanks for getting back to me so quickly 🙂

      I’ve heard contradicting things about this as well, which can be really frustrating for us patients. Apparently with COPD, the lungs can be over-oxygenated, meaning wearing oxygen when it isn’t absolutely needed can cause problems but I’ve heard this isn’t the case for IPF and that is because of the oxygen levels in the blood. I fear my lungs will become “lazy” as you say, if I am wearing it and maybe not needing it but I don’t know if that is a valid concern or worry. I’m hoping to find out more information on this, as my saturations are usually okay (unless its upon exertion) but my breathlessness can be quite bad. I’ll see what my doctor says and try to write back, feel free to remind me with a gentle nudge if I forget. Thanks and chat with you soon!
      Charlene.

  6. Ruth Edwards says:

    Hi Charlene,
    I hope you do check with your doctor about your belief that your lungs will adjust to requiring oxygen if you use it often. This is just my experience and opinion, but from my own situation, I had an bad infection in Aug. 2015. Hospital stay and then on oxygen. I required it to be at 8 ltr. on exertion. Just walking a couple of feet was hard. I had it on 24/7 but I also started exercising 2 hours a day. In one years time, I had not only lost my prednisone weight, but had got my oxygen use down to only using for sleeping and a few pick me ups along the day. I lasted like that for a year. Until, I got particulate from the fires that were burning and another hospital stay. At present, I keep my oxygen anywhere from 6 – 8 ltr. Still exercising and have again gone from 24/7 down to where I can go off while sitting, take it to 4 or less while standing around. I find the oxygen helps my lungs not have to work so hard, so less damage is done.
    I hope you check out with your doctor if ‘coddling’ is recommended. Plus, you have to do what feels right for you. For me, a well oxygenated body feels right.

    • Charlene Marshall says:

      Hi Ruth,

      Thanks so much for reading my columns and reaching out via the comments. I definitely plan on checking with the doctor about this, as you’re right, I know the oxygen helps my lungs work not so hard which is probably ideal. My concern is that giving them oxygen too often might cause problems/dependancy, but then I’ve also heard this isn’t true for IPF patients, only those with COPD. Apparently, patients with IPF can’t get too much oxygen but I don’t know if that is true or not. I should probably do what you do, and go based on how my body feels with or without oxygen, good suggestion. I’m hoping to chat with my physician too 🙂

      Thanks for writing and I hope you’re doing alright.
      Charlene.

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