Why I Am Reluctant to Share IPF Struggles
Do you ever feel that sharing difficult news about yourself is a burden on your friends?
I have been struggling a little with this recently and, as a result, I am feeling very alone. Writing this column is not easy.
To explain further, I have an upcoming meeting with my respirologist, and I am anticipating hearing some news that will be difficult to accept. As I know, the fibrosis in my lungs is spreading and evolving. I also have had some cardiac complications arise on my recent scans and tests. I could be just assuming the worst when I say I anticipate hearing bad news. No one has alluded to this. But either way I am scared and nervous.
One of the most upsetting aspects of this is that I am reluctant to share with a couple of close friends that I even have a doctor’s appointment. I have an amazing social support system around me that is comprised of family, friends, colleagues and even online, which is the result of writing these columns. To those who know I am referring to you, thank you for that support. But, at the same time, I don’t want to burden any of those people. Since I am a young adult, many of my friends and colleagues have small children and/or careers that are just taking off. As a result, the hours are long, and the commitment to proving oneself in a new job is strong.
I struggled a bit with the issue of discussing my doctor’s visit with a couple of friends who have offered to be there for me in any way they can, including listening to the “hard stuff.” I appreciate these friends more than I can put into words, because with their backgrounds (social work and family therapy), I know we can talk about difficult topics: What if I die before I’m 30? What if I don’t want to consider lung transplant? What will dying from this disease feel like? I can go into deep conversations with these friends that I couldn’t with other friends or family because it is so difficult for them to digest, and I appreciate this more than they could know.
My struggle is that lately I have been reluctant to share with them the difficulties that have come my way. I hear regularly from them about how busy their lives are, and how they feel they can’t stay on top ofwork meetings, social commitments, their kids’ activities, and so on. How dare I add the pressure of my ailing health on top of their already busy lives, right? That is what runs through my mind.
However, then I am faced with this loneliness and left to deal with my anxiety, which is through the roof about upcoming appointments, on my own. I know my friends wouldn’t want that. I know they would be angry at me for keeping my health issues from them and assuming they are too busy. But I’m not assuming, I hear how busy they are and I hear how upset and overwhelmed they are when we talk, or in response to others asking how things are going.
Recently, I saw the tears of frustration from one friend because she feels like she can’t keep on top of her family’s schedule. I want to respect how she feels, and even support her if I can. I don’t want my health issues to consume more of her time and energy, which already is spread very thin. But at the same time, she wants me to share all of my news with her so she can be there for me.
What is the solution? I don’t want to swallow all of this news on my own, or deal with the anxiety around a potentially bad appointment alone. But I am reluctant to share sometimes, too. I don’t want to feel like a burden.
Do any of you feel stuck in this emotional vortex, and if so, how do you manage?
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.
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Comments
Tammy van Dongen
Hi Charlene,
Our situations are very different but I wanted to offer you my perspective. My dad is the patient (70 y/o) and I am obviously not in your shoes. I am 51 y/o and past the "busy" stage with my kids, etc. that your friends are at. My parents live in PA and I live in GA with my family. My advice is to share with your friends as much as you want/feel comfortable with. Have a frank discussion with your friends that you will keep them in the loop and they can decide for themselves how much actual time they can offer at that moment. Let them know that you realize that some weeks they may have more time than others and some weeks you will need them more than others. Keep the lines of communication open and don't make decisions for each other. Hope this help a bit.
Janet Klingbeil
Oh my dear,you are robbing those who love you the opportuniy of supporting and loving you during this very difficult journey. Please,let them decide how much of a burden they think you are. I get the feeling they would take on that "burden" without giving it a secon d thought. Do not punish yours elf for being ill. Please,this is when you need them most.
Peg O
Charlene --
You are very kind to worry about your friends' problems and to try not to add to them, but you do need outlets for your own concerns, as you know.
If talking to an older woman would help, I have the time and can offer a sympathetic ear. Just email me and I will reply with my phone number.
Wishing you the best.
Almudena Landera
What a wonderful advice! I think the same.
Colleen Puniard
Hi Charlene,
I agree with Tammy that you should include your friends as much as you feel comfortable with. This will not only benefit you but may add some perspective to their own busy lives. We are all mortal. Do they have their priorities in balance? We don't know when our final day will be.
As your friends I really think they would want to be there for you and would be sad to be excluded because that's how friends are. Be grateful that these folk are in your life. Let them support you just like you would support them if they needed you.
Thank you for being there for me. I'm 68 and only recently diagnosed. I feel so sorry for young people who have this dreadful desease. Your thoughts make me think, and your situation makes me stop pitying myself.
I hope the medical report isn't as bad as you're expecting.
Laura Reed
Oh Charlene! Whenever I am sad and overwhelmed with my husband's situation I think of you! I wish we could all call each other! People do find it hard to understand- I am always being given well intentioned but incorrect advice- people find it difficult but please use us and your friends-❤
MARY BURKE
MARY BURKE HI CHARLENE, IM A 85 YRS WITH PFS, ITS HARD NOT COMPLAING TO FAMILY,I PRAY A LOT. I THANK GOD I LIVE HERE WITH MY DAUGHTER.I NEVER WANT FOR ANY THING.WHAT A WONDERFUL CARE IM GETTING...YOU KNOW ITS SCAREING,WHEN YOY CAN'T CATCH YOUR BREATH.IM ON O2 OXYGEN 24-7.AND ITS A BLESSING...I WAS COUGHING NON STOP FOR 3 MONTHS,THAN THEY FOUND THE PROBLEM. I HAVE COPD ASAMIE,DIABETUS,WELL ENOUGH SAID..GOD BLESS A FRIEND TO VENT TOO ANYTIME.MARY. PLUS HERE IS MY E MAIL FEEL FREE..
William Nolen
Those that love you will just want to do what they can to support you, no matter their own hectic schedules. That support means more than being late to a Girl Scouts meeting for their daughter or may mean picking up take out for dinner, but that stuff is so irrelevant compared to being a loving friend or family member. I understand the guilt, I'm sure my dad felt It to tell me, but I can tell you that I would've felt guilty not doing what I could the next 5 years to be with him. I didn't drop my life. I still went to work and he helped through a divorce with a newborn to take care of. I didn't feel guilty to lean on him, even as he was getting sicker, because the people that matter should know that we all need each other. My best friend lives 4 hours from me and if it were him, I'd want to know. I wouldn't put my own life on hold, but I would prioritize calling more, going down to visit, and letting him know that I had his back however he needed me. Don't feel guilt. They may not truly understand what you're going through, but if they truly care about you, they'll show their empathy and try to support you in their own way. God bless❤️
Matt Patrick
Hi Charlene and others with this problem.
I can identify!
I was 36 when I was diagnosed with IPF and told that told that I would need a lung transplant. At first I didn't tell anyone. I'm also a nurse and I thought I could handle it. I had also decided that I would not be getting the transplant. I would just bow out gracefully. It wasn't just denial, as a nurse I had seen some pretty extreme cases, and I didn't want to be medically tortured to death, but God knew better for me and I ran into 3 patients in 1 month that had all had successful lung transplants. I decided I was going to give it 1 shot. I would get admitted to the hospital with pneumonia or get more bad news or test and keep it to myself thinking somehow this was doing everyone a favor. In time I learned the best thing to do it keep a blog or e-mail list. That way people can get the update when they want, I wasn't hiding anything. The most important thing to remember is to always be positive even in you writing.
I'd also recommend joining a support group. I'm a member of several on Facebook, I don't contribute much but if I ever have a question everyone there is helpful and has dealt with it themselves.
Anyway that's my two cents. God bless and good luck! ;)
BTW, I had my double lung transplant last July and I'm doing good. Miracles happen!
Missy Harrington
Dear Charlene,
My husband suffers from IPF. His two older sisters have passed away battling this same disease. He was fortunate enough to get a single lung transplant two years ago and has been doing well until just recently. Now he's back to requiring oxygen almost around the clock again. I know he's scared to let me know how he feels; he never wants to be a burden to me or anyone else for that matter. As his caregiver, I get frustrated in not knowing how he feels when he hides things from me. I understand, but it still hurts to be left out when maybe I could help. Your true friends can be so much help to you and will never turn their backs on you...trust them and let them share in your life--all of it, both the good and the bad. If I can help you, please don't hesitate to email me.
Sunny
My dearest Charlene,
My mother suffered with IPF for three years. I know there were times she did not want to burden me with her anxieties or concerns. But, please let me reassure you...your friends and family want and need to know. That is what we do together as friends and family, we share. Share all, the joys, sorrows, anxieties, fears, and laughs. Let your friends know your concerns about burdening them, but that you appreciate them and need them. And tell your friends that you want to hear their joys and struggles, too. Mutual. Sharing your concerns allows your friends to benefit so deeply from being able to provide support for you. Having them share their joys and burdens is a blessing to you as well as you will feel the joy of supporting a friend and hearing their struggles might even provide a little respite for you. My life was crazy busy when mom needed me. And I am eternally grateful to have had the gift and blessing of being there for her daily. It was not a burden, it was a joy for me. In giving, we receive. I will pray that your concerns, burdens, and loneliness are lifted by the loving support of your friends and family. My best to you.
John tripp
Hi Charlene, I want to thank you for this article, plus your honesty. I have just turned 82. I have had heartattacks two . The last they went
in and did several by passes. I got back up on myfeet and then later on came down with a breathing problem. I can no loner do what I love
playing golf. I am on oxygen. It has been a good ride through life. I now live one day at a time.I also thank my God for keeping me alive
through out the day.I have four adult children and six g childre andone g g child. Yes I feel lonely my wife passed seven yrs.All I can say is for all of us Enjoy everyday. Love Life Today
MARY BURKE
29 2017I REALY ENJOY READY THE COMMENTS,I THOUGHT ABOUT MY PAST AND I WAS A NURSE FOR 43 YRS TAKING CARE OF THE ELDERY,A HARD PROFESION, BUT OH SO REWARDING.I LOVED ALL MY PTS.I NEVER THOUGHT WOULD WIND UP LIKE THIS.I TELL YOU IF MY DAUGHTER HAD NOT HAVE BEEN HERE, MY LOUNGEING CHAIR GOT STUCK IN THE UPRIGHT POSION.I HAVE A CALL BUTTON FOR OUTSIDE HELP,BUT SHE WAS HERE THANK YOU MY GOD..I FIND MYSELF WORRING ABOUT MY DAUGHTER, SHE IS YOUNG JUST REMAIRED TO A GREAT MAN..TAKING AWAY THE TIMES SHE COULD USE.
SHE HAD ME MOVED DOWN TO DELAWARE,ITS HEAVENLY,OF COUSE IWAS'T SICK THEN.I WANT TO GET TO SHOPING FR FOOD AGAIN,I MISS IT,I WENT 3 WEEKS AGO,KNOCKED OVER BOXES OF CHIPS,,THE ELECTRIC CART WAS FULL, AND IT WAS HARD FOR ME TO TUSHE COMES TO GET ME WHEN I CALL.O2 24-7. GOD BLESS ALL. MARY IDA
Al
Your good friends always understand. You're not a burden, just be yourself, that's who they love you for.