We All Need Support!

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“This is the sixth blog in the Caregiver series that discusses support groups.”

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The quote really speaks to all especially those who have received diagnoses. After my husband’s diagnosis in October 2021, you are in a whirlwind of your mind grasping the diagnosis, doctor’s appointments, durable medical equipment, and medical tests. After several months, you realize that support groups would be beneficial as your progress through the disease. For us, that came about 6 months in.

There are numerous benefits to being in a support group whether it is in-person or online.

Shared Experiences

Sharing your experiences in a support group decreases your feelings of loneliness, isolation, or feeling judged when using oxygen. The support group reduces distress, depression or anxiety when talking with other people that are going through the same struggles. You can talk openly and honestly about your feelings in a support group with a facilitator that makes all participants at ease.

Better Coping Strategies

By participating in a support group, your skills to cope with challenges improve. Typically when you join a support group, the other members have already been in the group and have received their diagnosis long before you have. They can offer suggestions on what has worked and not worked for them.

Self-Care

Support groups challenge us to focus on self-care. They inspire us to stay motivated to manage the chronic conditions of the side effects and dietary restrictions and to stick to treatment plans. Of course, you will find not all members have the same treatment plan or some who have chosen to stop taking medications due to the extreme side effects from some of the medications. Always consult your physician before attempting that.

Sense of Hope

Finally, support groups provide a sense of hope as your navigate your diagnosis. They can provide support that your family and friends cannot provide as they are not going through your diagnosis. Not all members in a support group maintain that positive attitude as the diagnosis has taken a toll on them. If that happens, change your support group. Always remain positive!!

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So when we were ready for support groups, the question was, “Where to find them?” We started at Google and it led us to these groups for Pulmonary Fibrosis. There are many more supports groups available so these are what we are currently using.

http://pulmonaryfibrosis.org

Due to COVID and the nature of the disease, all support groups are currently online.

http://lung.org

This link is the American Lung Association and they have a Better Breathers Network which is a nationwide online patient support program that gives direct access to education support and connection to others. Another resource is the Better Breathers Club which is an in-person support groups in different areas. The Club teaches you ways to cope with lung disease and provide support from others that share your struggles. Check your local area to see if they are doing in-person meetings based on COVID in your area.

Inspire App

For the app lovers, the Inspire app provides a community for numerous diseases and conditions. As with all things, gravitate to the positive communities.

Facebook Groups

For those that use Facebook Groups, these groups provide a community for the topic you are interested in. For Pulmonary Fibrosis, check out PF Warriors.

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It is always better to live life together and not alone. With support groups, you can be in connection with people who are sharing your journey!! Be proactive in your health!!!