What I Don’t Need as a Patient with IPF

What I Don’t Need as a Patient with IPF

younger than 30
Sometimes when people ask me, “What do you need” or “What can I do to help,” I feel like a broken record since my response is usually, “I don’t know.” I wish I did know what I need when I am in a poor emotional state, sobbing uncontrollably about what my life is now like with idiopathic pulmonary fibrosis (IPF).

I wish I had a quick answer for how you could help me when I feel like I am falling apart and everything around me is crumbling, but I don’t. I don’t know how to explain to you what it is like not being able to breathe and feeling constantly exhausted, not only mentally but also physically, due to being chronically under-oxygenated. I don’t know how to explain to you how painful it is and how stressed I feel about having medical expenses that are added bills on top of trying to manage everything else financially as a young adult.

Sure, I know everyone has bills, and I am not trying to whine. But on a single income, it is very difficult to manage so many expenses, including rent/mortgage, student lines of credit, utilities, credit cards, groceries, car payments, insurance, etc. When there are medical bills on top of that, it feels incredibly stressful and unfair because I didn’t do anything to deserve this disease. What is the solution to this, you may ask? I don’t know, because I can’t just cut out the medical expenses that I need.

As you can see, I don’t have many answers to what you can do that is helpful. I just don’t know what I need sometimes. That said, I certainly know what I don’t need, and I thought I would write this column to gently remind family, friends, and caregivers who have a loved one dealing with IPF, or any other chronic illness, what we don’t need. And that is:

  • Putting expectations on us. I know that I used to be more helpful with a number of things for others, but given my fatigue and limited energy due to my IPF diagnosis, I can’t keep up anymore. Please don’t expect me to be present at social events or to go from one activity to another without resting. Please don’t expect me to entertain your children (a task I used to thoroughly enjoy) or be able to take on your emotions around my illness. Being supportive of my friends used to be something I was proud of, and I always offered to help and wanted to listen and be there for them. Lately, and I wish this weren’t the case, I am grappling with my own emotions. And as much as I wish I could take on things for others, I just can’t.
  • Placing blame on my (past) financial choices. Sometimes I need my friends and family to be there for me when I just need to vent. Lately, this need to vent is about finances. I don’t need you to offer me a solution, nor do I need you to blame my choice to partake in an international master’s degree program (before I got sick), or to travel and experience different parts of the world. Don’t blame me for my choice of residence when I wish I could live somewhere cheaper. The reality is that I live in a city where housing costs are astronomical right now, and I can’t find anything cheaper. Living in a walk-up apartment with a lung disease isn’t exactly ideal. In hindsight, I probably could have done things differently financially, but when I am just asking you to listen to me, not resolve things for me, I would really appreciate you not placing blame. I am doing the very best I can right now.
  • Dismissing me when I need to talk. Believe it or not, this certainly has happened with family members, and while I don’t expect you to drop everything to support me when I need you, I am hopeful that we can set aside a time to talk if you are busy when I reach out. When you want to be supportive, this is one of the biggest ways you can be: Please just listen to me when I need to talk. I am not always looking for an answer; sometimes I just need an ear or a shoulder to cry on.

I know supporting someone with a chronic illness, such as IPF or something else that is life-threatening, is not always pleasant. I know that it can be incredibly frustrating, especially when you can’t do anything about the fact that we have been diagnosed with this disease. Believe me, as patients we feel these things as much as you do, and often we feel things more because we have the disease, symptoms, and medication side effects to go with the feelings. That said, please accept this gentle reminder about the things we don’t need from you.

The things I’ve listed amplify our guilt and make us feel worse. You have every right to vent to others about these things, and you should have a support system of your own — you deserve to have that. So, when you ask about what you can do to help, I may not have an answer about what I need, but please keep in mind these are things I do not need.

***

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.

9 comments

  1. Lea says:

    Wow. Just because. Wow. I love your respect for others in the midst of crying out from pain. Your journey is a hard one.

    My standard has been, “Please keep me in your prayers, even if I don’t get well. It does help in ways you cannot see.” The prayers of others help on so many levels.

    Even from friends who live without any sort of faith, it is good to hear that they keep warm thoughts of me.

  2. Ray Hastings says:

    you should investigate your states MEDICAID program. if you qualify the will pick uptake cost of your medical costs.

  3. Donald Turner says:

    Charlene,
    Yes it is difficult and I suppose writing about it does help you. I wish for you a peace that surpasses all understanding like I have. I will continue to pray that you find it.

    God Bless You Always

  4. Lorena McManus says:

    Charlene, well done! I am 20 years older than you and have recently been diagnosed with pulmonary fibrosis related to rheumatoid arthritis. I’m also genetically predisposed to cancer so I’v had 3 primary cancers. I too did a masters degree while I was working. Had to stop working over a year ago.

    I applaud you for your post. It takes courage and energy to write those words and yet I believe they are sentiments we all want to express. I feel your pain and frustration and I am so sorry you have to contend with this disease at such a young age. I’m Canadian so I feel very fortunate that I don’t have to contend with medical expenses. It is so very unfair that you have this burden to bare in addition to all of the others you have!!! Never feel guilt for the life you chose. There is no way you could ever have predicted this would happen. You were young and living your life, a very accomplione from what I read. Celebrate all that you did and celebrate yourself. I hope the people who need to get your message read your post. If you don’t mind I’ll be sharing it. You’ve helped me already. Be kind to yourself & all the best to you.

  5. This is such an honest and beautiful post. I know in some respects how it feels having dealt with mental illness and people aren’t patient or empathetic to your needs. In some ways I try to look at it that they too are frustrated that they can’t do more and sometimes don’t realise they are externally venting this or reacting to you when you’re trying to reach out. The psychological and emotional toll of IPF is huge that you don’t always need an answer to why you’re feeling low or down, the very disease itself is big enough to comprehend with. And don’t ever beat yourself up for past choices or allow others to make you feel guilt, no one will expect something like this to happen and you can’t live a life “just in case”. In times like these you learn who you can rely on and who you can talk to, and the ones who you might need to be a bit more “sensitive” around because they are a bit more difficult to approach. It’s all a learning curve and not an easy one, but I’m glad you’re willing to speak up and be honest about what does and doesn’t help you. Standing up for yourself is key xx

  6. I believe it is extremely hard for family and friends to truly understand what a person with IPF is going thru on a daily basis. How does anyone know until they have an experience that has a similar effect. I find myself commenting, are you trying to mimic my cough, or as I’m hugging and puffing with my shortness of breath, I’ll comment, you think I just ran a quarter mile or something. I feel this can hopefully bring to mind a comparison of what we live with 24 hours a day, and every day. Compassion can accidentally be overlooked, because myself I try not to complain of my tiredness, or depression, lack of ability to not be able to do all the things I would enjoy doing, because I want to enjoy the company of others and make the best of every day. Sometimes the best I can do is watch a movie and get a load of laundry done, there is always tomorrow. So take the time to rest if needed and if it takes all day to accomplish a task….so what. IPF is awful, but just keep researching and help yourself to be as comfortable as you can. I truly believe our positive thoughts and attitude is helpful.

  7. Ron Cade says:

    I guess the most we can do with our IPF is to keep on keeping on. I wish we could really know what thoughts our fellow IPF patients have. I’m not sure my family members know that this disease is a killer, allegedly within two to five years of diagnoses. I’ve not told this to all of them, just sort of hinted. I guess I owe it to them to tell them but on the flip side I don’t want to burden them. Of all the symptoms I’m told of for IPF, I have only two so I wonder if I really have IPF. I’m short of breath and am on the oxygen hose 24/7. Much exertion and I’m huffing and puffing. No chronic cough. I hardly cough. No finger shape issues.I feel great most of the time and no pain out of the ordinary for an old guy. Off the oxygen hose while moving around and my O2 level is in low to mid 70s quickly. I understand I die at 65%. I got that from a tutorial about putting on the oxygen mask on a airplane. I will ask the doctor . I don’t know that anyone can do anything for me except pray for me and continue to be my friend. My friends are still here for me. I thank them for that. I’m in good spirits. I read a lot and watch too much baseball. I have accepted my outside activities have been limited although I don’t like it. I dream of fishing and hunting and even working. I teach about Jesus and God and being saved when I can. I am content with where I am. Might as well be. I read a lot about PF and wonder what I can do about something I never heard of until I was told I have it. I did some rehab this year and met a guy who is trying to get lung transplants. He has been dealing with PF for seven years. I have met several people with lung transplants and would not have known had they not said. So maybe that’s an a option for you someday Charlene. Keep talking. Cheers!

Leave a Comment

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