Why the value of PF support groups is immeasurable

How do you value something that doesn’t have a standard of measure? If you invest in a stock, there is a cost per share. You can see its value at the moment of investment. Over time, you’ll witness both gains and losses to that value. When you sell the stock, you will have a measure of value over the period of time you held it in your portfolio.

Support groups do not come with a standard of measure. The value is not measured in dollars, pounds, or acreage. It is my experience that the value cannot be measured.

What a support group is

Peer support has long been viewed as an effective therapy for people who share a commonality. For example, Alcoholics Anonymous, founded in 1935, is a good example of a peer-based support group. The concept was initially created by two people whose experience with alcohol addiction was of common interest.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, finding a support group wasn’t one of my top priorities. There was no specific reason, but I didn’t think it was what I needed at that point on my journey. How wrong I was!

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What a support group is not

Some support groups have a guest speaker as the focus of their meeting. That speaker might be a medical professional or a community advocate. As a Pulmonary Fibrosis Foundation (PFF) Ambassador, I have spoken to a wide variety of groups to raise awareness and share my patient experience.

A support group is not a telehealth visit. In most cases, the speaker has never met the members of the group until the meeting begins. Because each of our journeys as patients and caregivers is unique, seeking a medical opinion or advice often places the speaker in a difficult position. Instead, I would suggest you take the speaker’s comments that raised a question in your mind, write them down, and take them to your next care team appointment.

The benefits of a support group

When you begin your search, it is important to recognize that not all support groups are the same. Some may feature guest speakers while others may rely on a dialogue among attendees who share their experiences.

The type of meetings also varies. Prior to the COVID-19 pandemic, most support group meetings were held in person. That quickly changed, and a large number of meetings turned to Zoom or simply stopped meeting. Today, as the opportunity for in-person meetings returns, there is a trend toward a hybrid meeting format, which allows those unable to attend in person to continue participating with their peers.

You’ll also find support groups in the PF community that focus on specific segments of the population. The PFF offers monthly virtual support group meetings specifically for caregivers, Spanish speakers, patients, or transplant community members. While the first three are self-explanatory, the transplant meeting is for those on the journey to transplant as well as those who have received a transplant.

The PFF link above also allows you to search for support groups in your area. Remember, virtual groups can generally be joined from anywhere where there is an internet connection.

It’s up to you

Select the type of support group to meet your needs and don’t be afraid to try different groups until you find the one that best meets your needs. In virtual meetings, don’t feel the need to be on camera. It’s your choice.

Support groups are an important tool for many patient communities, providing education, awareness, and an opportunity for social connection. During the pandemic, these groups became a method of avoiding feelings of isolation. To me, support groups provided an opportunity to be among other people who understood my disease.

I participate in and lead a support group. It is simply another way I can make every breath count.

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.