Responding to the Comment ‘You Are So Strong’

Responding to the Comment ‘You Are So Strong’

younger than 30

I have a love-hate relationship with the need to be strong on this journey with idiopathic pulmonary fibrosis. It is important to be strong, but I think it is equally important not to show, or attempt to show, strength, especially when you don’t feel very strong.

People sometimes tell me I am “so strong.” I’d like to share some of the things that go through my mind when I hear that.

On one hand, it is reassuring when people comment on my strength, or ability to be strong, in the face of my disease, because sometimes I surely do not feel strong. On the other hand, I sometimes dislike it when people say I am strong because I am thinking, “What choice do I have?”

Being diagnosed with IPF, especially at a young age, was not something I could choose. It also is not something I would wish on my worst enemy because, as the slogan of the Australian Lung Foundation says, “When you can’t breathe, nothing else matters.” This disease is very difficult to manage. However, once you have time to process the news of the diagnosis (and that can take years!), swallow the likely prognosis and digest what needs to happen in order to be “cured” of the disease, you do become a little desensitized to the reality that you have a fatal illness and will require an organ transplant.

Let me be clear; you are not always desensitized. I still have moments that it hits me — hard — and I have trouble coping. But, for the most part, I feel like I am regurgitating a speech, or the horrible experience of someone else’s life, when I am talking about my disease. I may even appear as lacking emotions or being nonchalant about it. So, where does that leave me when people tell me “You’re so strong?”

Everyone who tells me I am strong should know I have had months to process the news of my IPF diagnosis. I haven’t done it alone, and believe me, I have done my fair share of crying, which was not helpful. There was a time when I did not outwardly appear strong, let alone try to be, and since then I think I have grown significantly in my emotional and mental ability to be strong.

There is a beautiful quote that has resonated with me throughout this. It comes from the late musician Bob Marley: “You never know how strong you are, until being strong is your only option.” It is true. What other choice(s) do we have? Giving up physically is not an option, because our body is already trying to do that (pulmonary function shutting down). And being angry all the time impacts your physical ability, as well as all the social and emotional supports you need as an IPF patient, so that is actually not an option either.

Not continuing with daily life tasks, especially as a young adult, is not an option either. What would I do with my time? It is not like I have children, or grandchildren, or a holiday house where I can spend the days, and I would much rather spend those days surrounded by people than alone on the couch.

IPF patients have to be strong and try to proceed with life, embracing our disease and need for supplemental oxygen. I know this is way easier said than done, I am guilty of feeling angry at my disease, too. Being strong and facing our disease head on is the only option for those of us living with IPF.

So, when you tell me how strong I am, I do appreciate it and am grateful for your comment. I do need to be reminded and reassured from time to time. But also know that I am likely no stronger than you would be if we were to trade places. I also am not stronger than anyone else facing an illness because, when faced with something like this, being strong is the only choice you have. #IPFstrong

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.

7 comments

  1. Colleen Adsit says:

    Hi Charlene,

    Thank you for your update and article, it was spot on. I too was just diagnosed in September of 2016, but I am older than you, I am 53 and I have an 18 year old daughter to worry about. I live in the Detroit Metro area and have my entire life. I sometimes think I’m past the initial “shock” of being diagnosed and I do at times act desensitized about my IPF and in a “it is what it is” attitude. I’m still adjusting, which takes times. My worst times are at night lying in bed. I thank you for your article and wish you all the best!

    • Linda says:

      Hi Colleen, I’ve not long subscribed to pulmonary news but saw your post and it seemed to sum up how I feel. I was also diagnosed in September 2016 with ILD and I am now 57, like you may biggest concern is my daughter just turned 17, my son’s are settled but the thought of not seeing her through university is always on my mind. Unfortunately at the moment there are no medications available for me, I’m in the UK and think we are way behind a lot of countries in research and knowledge.
      Linda

  2. John Archie Henderson says:

    Hello Colleen,

    Never be afraid to show that you have strength, it can inspire those who need it. Some folks need it more than others, especially within this IPF journey. I can only say that never bring personal ego into strength, only bring compassion, caring and understanding. Me, I try to develop strength habits daily: within my own silent times, my personal observations and interactions. There’s never enough of it and if you seek and ask for it, it will be given to you (that great big universe out there gives many things of value to us).

    I once saw this quote, and for some reason, i seem to remember it. It’s from ‘Norman Vincent Peale:

    “Become a possibilitarian. No matter how dark things seem to be or actually are, raise your sights and see the possibilities … always see them … for they’re always there.”

    Your journey through this ‘bastard of a thing’ (and let no one tell me it’s not exactly that) is no different to my journey in some way. You either fight with each and every breath, or you just sit back and let it beat you (and for me, i ain’t no easy catch baby!!!). I plan to fight this until my last breath: if it wants me, it better work ‘bloody hard’ to get me. That thought brings me strength.

    Kindest regards ‘kiddo’, take care, and keep fighting.

    • DB Callahan says:

      John, I know your comment was to Coleen. But I must say I enjoyed reading it and it made me smile and feel better.
      I also have IPF and will fight with everything I have in me. I will never give up!
      Thanks for sharing positive comments!
      Best Regards to you all!!!

  3. Colleen Adsit says:

    Thanks John, I appreciate your words of encouragement and enlightenment! It is a tough and scary disease! I wish you all the best and keep fighting!

  4. Belinda McManus says:

    Hello, I was the caregiver for my husband,Tommy, who was diagnosed with IPF in 2010 and received a double lung transplant in 2014…at the age of 64. IPF is a horrible disease that slowly entered our lives but within a few years had completely taken over. I hope I can give some encouragement to other IPF patient and their families. I know transplant surgery may not always be the answer for all IPF patients but start discussing the possibility of transplant with your Dr. early. It’s been 26 months since Tommy’s transplant and he’s doing great! It has given him (us) another chance at life. I pray that one day soon there will be a cure for IPF and other lung disease. Please encourage organ donation to friends and family, it does save lives. God bless each of you!

    • Angie says:

      These comments are giving me so much hope. I have aggressive PF and haven’t responded to treatments so far. Each month I see my doctor my lung capacity has decreased. On 2/22, I have an initial appointment for a lung transplant in NE. I am 48 years old and Mom to 3 boys, the youngest is 11. My husband has taken over the household duties. I don’t know what I would do without him. The lung transplant is my only hope, otherwise I don’t have much time.

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