Being diagnosed with pulmonary fibrosis is an overwhelming experience
In a moment, our lives are changed forever when receiving this diagnosis. How do we absorb being diagnosed with a terminal illness? Where do we get answers to our many questions? How do we get support from others who truly understand what we are going through? Where can our loved ones find the support they need? How do we process all our emotions?
There are so many unknowns that come with this scary diagnosis
We have so many questions about prognosis, treatment, oxygen, lung transplant possibilities, ways to cope … and life expectancy. There are many unknowns that cause us angst, fear, grief and confusion. This is especially true after initial diagnosis, and as the disease progresses.
We need information, comfort, hope, courage and the company of others who understand what we are going through. This is true for patients, caregivers and loved ones as well.
So, where do we get the support we need?
Hopefully, lots of places. Our doctors, friends and loved ones are huge sources of help. Getting trustworthy information online, as well as being part of a support group can be of great benefit as well. It really helps to talk with others who understand exactly what you are going through. Support groups meet in person as well as online.
What support groups provide
Don’t go it alone. You can:
- Get questions answered.
- Learn skills to live with PF / IPF.
- Find out other patients’ experiences with medications, oxygen use and medical procedures.
- Vent about how difficult it is to deal with this disease.
- Connect with other patients and caregivers who truly understand.
- Receive comfort, love and prayers when going through hard times.
- Find hope to live the life we have to the fullest.
- Get tips for dealing with oxygen.
You can visit the Pulmonary Fibrosis Foundation to search for a group in your area across the United States. You can also contact foundation director of programs Kate Gates directly for help at firstname.lastname@example.org.
Many people report that they feel less alone and are able to cope better with their disease because of their interactions with other patients and loved ones who are on the same PF journey. It is truly a help.
If there isn’t a group in your area, it’s not your thing, or it’s too hard to attend in person, there are plenty of options to connect with other PF peeps online.
Online information and support
Some organizations have pages on Facebook with lots of good information and interaction. Some pages you can visit whenever you’d like; you don’t have to join a group to see them. They are available to anyone on Facebook. Two I recommend are Pulmonary Fibrosis News’ Facebook page and Pulmonary Fibrosis Foundation’s Facebook page.
Online private support groups on Facebook
There are many wonderful groups you can join on Facebook that provide much needed information, interaction and support. Anyone can see the name of the group and its members, however, only members of the group can see or access any of the posts or other content.
If you are interested in any of these groups visit their pages, and click the “Join Group” button. The administrator of the group will get back to you. Please note that these groups should not replace regular medical attention and advice from a trained medical professional.
PF Warriors: I just recently became one of the administrators of this group. We are a closed group. The four administrators of this group include two patients, one caregiver and a lung transplant recipient. We provide information, interviews and support from these unique perspectives. Our members include pulmonary fibrosis patients and caregivers. We want this to be a trusted place to share, learn and meet others.
Pulmonary Fibrosis Patient Support by Breathe Support: This is a closed group for PF patients only, whose purpose is peer support and dissemination of information about PF. Care for those affected by PF is increasingly important because of lack of knowledge and information about this disease. While it is prevalent around the world, PF is still not well known by many, including in the medical community. This group is a safe place for those affected by PF to post their thoughts, feelings and questions.
Ultimate Pulmonary Wellness: This is a closed group whose purpose is to provide education, support and encouragement to people living with pulmonary or cardiovascular disease, their families and friends, caretakers and clinicians. Dr. Noah Greenspan created this group, and provides tools to live the best life possible with this disease. Webinars and resources are shared to slow the progression of PF through encouragement to take medication properly, exercise, eat right, prevent infection and reduce stress.
Pulmonary Fibrosis Awareness Facebook: This is a closed group for PF patients and their families. It provides up to date information about PF. This is a trusted place to meet other patients and their caregivers.
Pulmonary Fibrosis: A Day to Day Survival to Breathe: This closed group centers on the patient, not the caregiver or family. The focus is on giving safe and caring support to patients as they discuss serious concerns. This includes a place to discuss traditional as well as non-traditional treatments, such as stem cells and holistic healing.
Lung transplantation Facebook groups
Lung Transplantation: Taking Flight with New Life Support Group: This is a closed group for pre- and post transplant people as well as caregivers.
Pulmonary Fibrosis Lung Transplant Support by Breathe Support: This is a closed group for everyone interested in or affected by PF. A place to find information about PF, share information and gain support. Discussion primarily focuses on lung transplantation.
Caregiver online support group
Pulmonary Fibrosis Caregiver Support by Breathe Support Facebook Group: This group is for PF caregivers; a place to find help and information for those caring for a loved one with PF.
Not on Facebook? Try online help
Two other websites that can provide help and encouragement for patients and caregivers:
Patients Like Me – Pulmonary Fibrosis Support: This is a free network where patients can track and share their real-world health experiences to help themselves, other patients like them and organizations that research their conditions and develop treatments for them.
Inspire Online Support for Pulmonary Fibrosis: This site connects patients, families, friends, caregivers and health professionals for health and wellness support. This is a great place to connect with others who know what you’re going through. This link goes to a support page for pulmonary fibrosis.
The resources I shared are based on my own experience. I’m sure there are other sources of support I don’t know about. I’d love it if you could share them with us.
I’d love to hear from you!
Have you been to any support groups in person? If so, what has this experience been like? Are you part of any online support groups? What has been most helpful about them? What other helpful resources could you share with us?
Please share this post with anyone you think could benefit or on social media. We’re in this together!
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.