Patient as Self-Advocate: It Seems Impossible to Keep Up

Patient as Self-Advocate: It Seems Impossible to Keep Up

younger than 30
As a patient living with idiopathic pulmonary fibrosis (IPF), I am extremely grateful to the researchers, doctors, health advocates, and other professionals dedicated to enhancing the quality of life for those of us enduring this horrible disease. I am thankful that research is under way to further understand IPF, and that clinical trials and publications are being released that will guide doctors in the most up-to-date treatment of their patients. That being said, lately, I am having a hard time staying abreast of all the latest information on my disease. I am also feeling a little guilty for wanting to take a step back from reading, watching, and interpreting the progress being made in the medical realm of IPF.

Does this make me a bad patient? What about a bad self-advocate?

We, as patients, know the importance of self-advocacy when living with a life-threatening illness and often assume that part of this role is being aware of the advancements in research for our disease. As patients, however, I think we can only take on so much and that there should not be an expectation for us to stay on top of the self-advocate role, which includes being aware of research and advancements regarding IPF. I know that some people, including other patients, may disagree with me, and I admire those who are in self-advocate roles. However, in my experience lately, I find this exhausting.

I decided to write this column to get suggestions from other IPF patients on how they “take charge” of their health or stay abreast of the latest findings on IPF and the progression of our disease. I agree that the role of self-advocacy is important for patients, but amid everything else I am trying to navigate with my illness, I just don’t have the energy to be reading about advancements in research or medical journals.

Sometimes, I see others post videos or biographies of medical professionals who are focused on the treatment of IPF and I try to watch those, but these days, that is about as much as I can tolerate. And so I ask other patients out there: Do you have a caregiver who takes on this role? Someone who reads about medication side-effects, suggestions for type(s) of supplemental oxygen, how to care for your physical, emotional, and spiritual self, and how to balance and schedule social events in your life with the need to rest? These are all things to consider just directly related to the patient. So how do other patients and caregivers remain on top of research, journals, and conferences all highlighting advancements in the field of treatment for IPF? To do this, do other patients attend support groups where this information is shared? What about listening to podcasts or monitoring posts in social media groups, where others contribute the information highlighting medical advancements pertinent to IPF? I know that for most of us, requesting this information from a medical professional or your doctor is not realistic because of the workload they have on their own plates with other patients.

These questions arose for me after someone recently overheard me venting about the difficulty of lugging around oxygen cylinders. These are what I use now to enable me to be portable, and I have various sizes of tanks including bags and accessories that are supposed to help me be more mobile. I appreciate the advancements in portable oxygen, but there’s too much to know. A woman who overheard me grunting about my oxygen tanks made a suggestion about yet a different type of supplemental oxygen that she thought would be a lot easier for me, given my level of mobility and my age. I have since called my doctor to inquire about this and she concurred, even stating that this type of supplemental oxygen is sometimes even better for my lungs. My immediate thought was, “How was I supposed to know about this?” Because of this conversation, I am left wondering if there is more that I should know about my disease and the best treatment of it. How am I supposed to stay abreast of all the advancements and research on IPF if I am struggling with having enough energy just to complete my daily functions?

Many of these questions in this column are rhetorical and are posed from a position of frustration, so I don’t expect answers. That said, if there are any patients or caregivers out there with suggestions, I would love to hear from you.

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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.

11 comments

  1. Rhoda Engelbrecht says:

    Know what you are trying to imply. One has to be so careful of making the correct statement. As you, am so tired of it all. Yes I know depression sets in. What to do? Exercise? Go out and mix with people? Am too tired to do much of anything. When there is no hope, what do you wish for? Try using mind over matter, body doesn’t comply. Trying to be independent, knowing you feel as though you cannot issue forth one iota of energy, but keep going until? Don’t know when the time will come, times I wish for it to come quickly, then feel so guilty of others that are worse off than me. Imagine there isn’t much that can be done when you are dealing with so many medical issues. How much can a person bear? Bear I will until I no longer can. Sorry for venting, times this cleanses your soul! We all need clean souls, don’t we!

  2. Risa Sullivan says:

    I feel the same way. Trying to keep up with any news that will better manage my disease gets to be overwhelming. By the way, which form of Supplemental Oxygen was made available to you instead of those heavy canisters? I have heard of liquid oxygen but don’t know anything about it.

    Thank you.

    • Rhoda Engelbrecht says:

      Rita, I looked into the portable concentrater. Called my insurance, social security, to see if I could be compensated, they said yes, so I ordered the portable unit. Lived alone, at that time in my seventies, with all the maladies of DOA, damned old age. Lived quite a distance from acute hospital care. So I ordered it, was told by the company they would send forms to Medicare and insurance co. Push came to shove, I had to pay it all. No recourse. Will tell you it has been my salvation. If electricity goes off, which it did, have the ability of using the mobile unit for allotted amount of time. Now in my eighties, had to move from my home in the mountains, couldn’t make it on my own. Thank God for family. Don’t know much about the liquid oxygen, those canisters, always scared me, and were so heavy. If you had to take a few, plus leaving in a hot car? I love my portable for getting out of the house. Don’t know how you’ll fare, but worth a try, look into it, there may be changes these past few years. Love
      my favorite saying, ” never, ever give up”. Good luck!

  3. Lynne Lefondre says:

    I have read this article
    I don’t have a caregiver or anybody else really to discuss my IPF with
    My children don’t want to talk about it and understand nothing

  4. Lea says:

    I have family. I have a Sunday School class. I am over 60 with ILD.

    I accept assistance from whomever will give it! There are actually advocacy groups that might help. My son does a lot of the footwork for me. He helped me get disability. He googles current issues.

    My son was the person most impacted by my loss of income when I quit work. I didn’t care if he and I starved. I was too tired to go on.

    The next person who helped me was a therapist, a licensed clinical social worker. He helped me know who to call and what to ask for. He said I was an easy client because I always had an agenda. My agenda was usually something like, “I’m too tired to drive a car. What do I do?”

    People will tell you not to be afraid to ask for help. But knowing what to ask takes a whole team!

    Best wishes to you. I will say a prayer for you.

  5. Jacqueline K. Kagy says:

    Hi, I have a question first. You are so young and I am wondering why you are not looking at getting a lung transplant? Especially when you appear to be losing ground fairly rapidly. As to staying current on what is going on sounds like you need another person-either a caregiver or a social worker. Because you are right-professionals don’t have your files in front of them and unless you are putting yourself there they are not going to tell you what you need to know because they don’t know you need to know. Make sense. Fighting this battle takes tremendous energy and perseverance. Wish it were different but isn’t. Fibrogen 3019 has an excellent Phase 11 result report. Phase 111 is probably coming soon. I have been on Phase 11 for almost 2 years and have stayed stable to even better. It’s worth looking into that study. Thanks, Kay

    • Charlene Marshall says:

      Hi Kay.

      I am struggling a little bit with your comment, and the feel of passing judgement, although I am sure it was unintentional. All of these things are in progress for me… what you suggested/commented is not new to me and has been in progress for months. There are a lot of barriers to lung transplantation and requirements of your lung function before you can even be considered. It does not happen overnight, as you likely know living with PF as well.

      • Jacqueline K. Kagy says:

        Sorry you thought I was judgmental. I just know little or nothing gets done unless you or me or maybe an advocate for you does the grind. As I am not in the age range to have a transplant nor would consider it right now as I am still able to work and 02 POC is at 3-4L if I have to wear it depending on what outside activity I am doing. I don’t use it inside or sleep (C-pap). My concern was that it sounds as if you are going down hill at a fairly rapid rate and that is the ONLY reason a transplant might be a serious option to consider. I hear you when you said death rate is fairly significant-true statement BUT death is a guarantee if nothing is done such as being a a lab rat or ???. Hopefully you are communicating with people who have had successful transplants or are in some drug study. Again sorry you felt I was judgmental. I was a nurse for 20 years prior to my career today as a Broker in real estate. I’m not judgmental-I just know if I need something done etc. it’s up to me to get it done. Again, maybe a social worker would be helpful. Find out from the person that recommended that what type and where to locate. A professional sounding board is always helpful. Kay

      • Kay Kagy says:

        Hi. I’ve been on phase 2 for almost 2 years. As phase 3 is in the works you need to get to the clinical trials for IPF website. Your pulmonoligist should have been aware of this study. Stats for 2 year results out and extremely encouraging. My condition has remained stable for the 2 years I have been on drug and in fact have shown slight improvement. Phase 3 will be the big one before potential FDA approval. Find out more and see about getting on clinical trials list. So worth it!!

  6. Jeannie Kendrick says:

    I can so relate to how you are feeling. I too have to advocate for myself and it is overwhelming sometimes. Lately I have been fighting with my oxygen provider to get what I need to be able to exercise outside the home. Trying to make everyone understand my needs while they are focused primarily on making sure the boxes are checked is frustrating. Sometimes I just have to take a break and when I’m up for it, I go back at it. I am fortunate to have people like the RTs at the pulmonary rehab I attend to help me sort through the bull. I love your articles!

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