It’s normal to feel overwhelmed by the amount of information available. Here are some useful resources that can help you understand the condition.
- Community and support groups can be helpful to connect you to other people living with pulmonary fibrosis
- Going to a patient support group can help you to learn from others with similar experiences
- Speak to your healthcare team about patient support groups online and in your area
Following a diagnosis of pulmonary fibrosis, many people can feel isolated. However, it is important to remember that you are not alone, and there are many other people who have shared experiences similar to you. These people often come together at support groups. Patient support groups are a valuable resource to help you through your journey.
Participating in a patient support group offers you an opportunity to get together and connect with others who are facing similar experiences. Patient support groups can help you to better manage your physical and mental health and the everyday challenges of living with pulmonary fibrosis. If you are feeling isolated, support groups can help you to feel comfort and understand that you are not alone.
Two great resources with pulmonary fibrosis support groups are:
- The Canadian Pulmonary Fibrosis Foundation
- The Canadians Living with Pulmonary Fibrosis Facebook Group
In addition to patient support groups that you can attend, there are also online groups where you can connect with other patients like you. Patient organizations support people with pulmonary fibrosis by having online groups where patients can connect with others who face similar challenges and also obtain information about living with the condition.
How can I find local and online patient support groups?
Work together with your treatment to find patient support groups in your area. Searching the internet can also provide you with information on online patient organizations and the support they provide.
Your mental well-being
Looking after your mental well-being is just as important as looking after your physical well-being.
“There’s two or three groups that I am involved with as far as PF goes. You talk to people. You look at a lot of problems that they have. It’s amazing how many of them have the same problems as you do. Someone has a question, ‘This is happening to me,’ and of course, myself or some other will say, ‘Yeah, this is normal over the years.’ We really try to support them. Sometimes, somebody comes along with something and I’ll say to myself, ‘Oh, yeah, that happened to me.’ So at least you can be aware of these things. I find the support groups that are online are quite helpful. Especially since...there are no local support groups. I’m not close enough to any location where they have support groups. And, of course, being on oxygen, I can't sit there, I can’t travel to these places for time limitations. I find the online is very helpful.”– Clifford, BC
(@ 11 years post-diagnosis)*
* Name has been changed for privacy.