Sentiments that Actually Help People with Chronic Illness Cope

Sentiments that Actually Help People with Chronic Illness Cope

younger than 30
It’s really difficult for me to hear from others that they understand what I am going through. Despite the motive for this sentiment usually being supportive, I struggle to accept the words, because unless they also have IPF, others do not understand what I endure.

I certainly appreciate that sometimes people do not know what to say when I tell them that I have a fatal lung disease at 30 years old. It can be uncomfortable accepting mortality, and naturally, people want to relate to my story. This is what we do as humans in general — we strive to feel connected to others regardless of how we do so.

So, people try to tell me they understand what it is like to lose breathing ability due to a disease that literally takes your breath away. Even though this infuriates me at times, I flatter them and accept their comments because I know they are only trying to help, and I am grateful for this.

It has become obvious in my two years of living with this disease that people often aren’t sure what they can say to me that is helpful. This situation is similar to supporting someone who grieves the sudden death of a loved one: What is there to say that can be comforting during such a painful time?

Recently, I started a dialogue about this in our Pulmonary Fibrosis News forums and will compile a collective document on helpful things people can say to others with IPF during difficult moments. Following are some of my ideas:

  • “That just sucks”: This has been said to me many times by the person I respect most. Usually, she says it because there is nothing else to say as I hit bump after bump in this battle against IPF. But, somehow, the words comfort me. It does suck. While the statement doesn’t offer solutions to my struggles, it is authentic. The statement doesn’t focus on solving the problem — no one can fix my lung disease. It is blunt and truthful: IPF life does suck.
  • “What do you need?”: This is a surprisingly uncommon question. I think people just don’t realize how helpful it can be, or they fear that it puts pressure on patients to identify what they need when we sometimes don’t know. While the latter is true, this question gives us an opportunity to assess what it is we might need at the moment, and ask you for it. Please don’t be alarmed if a patient takes some time to answer this question. We appreciate the offer very much, and want to give an honest response.
  • Different metaphors: I know this is very vague, but metaphors are often really helpful. In a recent conversation with other patients, many discussed the different helpful metaphors that others have shared with them. My manager shared one that really resonated with me. In response to yet another hiccup that I am facing, she told me to tie another knot in the rope and hang on tight. This gave me a good visual of my strength and helped me realize that I am capable of fighting this setback. I really enjoy metaphors. If you have a good one, please share in the comments. 

What are some helpful sentiments that people say to you? I’d love to hear from you and anonymously add them to the collective document I am compiling. Thanks in advance.

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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.

6 comments

  1. robert o'brien says:

    “How ‘ya doin’ Bob?” “How’s the rehab going?” “Hang in there pal.”
    These are some of the sentiments that come my way. Just that they are concerned is a boost. I have had IPF for probably several years although official diagnosis came in December of 2015. That was tough to take but I made up my mind right then and there that I was going to do what I was told and get on with my life the best I could. I am on my 3rd year of Esbriet and pulmonary rehab. I have been tested for transplant and passed all the tests but I am too stable to list (kudos to the Esbriet). I have good days and bad days but if I am on my feet, I’m doing OK. Don’t take “understand what I am going through” too literally. That they don’t know what you’re going through is right but no one does but YOU or ME. Take the intent and feel good that someone cares because they really do and sit back, have a cup of tea (or whatever), smile and relax. I follow Scarlett’s mantra “tomorrow is another day”!😜👍

    • Charlene Marshall says:

      Hi Robert,

      Thanks so much for reading my column and contributing your comments. I always appreciate hearing from others who share their experiences!

      Yes, I agree with you regarding sentiments that people sometimes say to us; it does feel good have our struggles acknowledged by encouraging words from others. Sorry to hear of your PF diagnosis, however, your commitment to living your best life with a positive attitude is very inspiring… kudos to you! I’ll keep my fingers crossed that your health remains stable enough not to warrant transplantation, and pray that your good days are more than your bad. Thanks again for sharing! Wishing you nothing but the best 🙂

      Charlene.

  2. Prasanta Chakraborty says:

    I salute the young fighters of IPF. At 68 I feel I have lived life well but people aged 30 or even less have not enjoyed this beautiful earth yet. May God give you will power. All the best.

    • Charlene Marshall says:

      Hi Prasanta,

      Thank you so much for your kind words, and for reading my column. I am going to do my best, as you say, to enjoy this beautiful earth and life despite living with IPF at 30. Thank you so much for your salutation, and I’m sending you much kudos and strength to continue on in your fight against IPF. Wishing you nothing but the very best!

      Charlene.

  3. Debby says:

    Most everyone is sympathetic to the plight of PF.
    HOwever, how should I react to a loved one who is in denial about my PF limitations and prognosis? ….even thought I have given them reading material about PF.
    I find this to be very difficult situation because I know how much I am loved by this person, but I need empathy !

    • Charlene Marshall says:

      Hi Debby,

      Thank you so much for reading my column and contributing your thoughts and questions!

      I’m glad most people are sympathetic in your fight against PF, this is reassuring to hear as I hope those people are also supportive to you when you need someone. This is a very difficult situation (having someone be in denial) to be, and unfortunately I’ve experienced it myself. It does take everyone some time to absorb the shock of the diagnosis and prognosis, it is just my hope that your loved one can eventually get there. If this is someone you rely on and need for support, you may need to address this sooner than later through a blunt conversation (I know, way easier said than done!). If it is someone you don’t rely on, maybe giving them some space to come to grips with your diagnosis and prognosis on their own, and offer your assistance to help them do that? Would either of these situations be possible in your current experience? It is a very difficult situation, I agree. Perhaps a conversation, approaching it from the perspective of wanting to help them be more comfortable with your diagnosis (even though that feels unfair, since you’re the patient). Thoughts?

      Wishing you success in resolving this difficult scenario Debby. Thinking of you ….

      Charlene.

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