Finding the right fit with pulmonary fibrosis support groups
After my IPF diagnosis, I quickly learned that one size does not fit all
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Are you familiar with the phrase “one size fits all?” When you see it, how do you react? For me, unless it’s on a baseball cap with an adjustable strap, I’m skeptical.
But I’m not always a skeptic.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I was entering a whole new world. I was embarking on a journey with no idea how long it would last, what the itinerary was, or who I’d be traveling with.
The day I was diagnosed, I began learning everything I could about IPF. I turned to Pulmonary Fibrosis News and the Pulmonary Fibrosis Foundation (PFF) for curated, vetted information. Thanks to both sites, I was confident that my decisions were medically sound.
My wife, Susan, and social workers at Inova Health Systems recommended that I begin attending IPF support groups. I tried several at the beginning of my journey and quickly learned that one size did not fit all.
Factors to consider
Support groups come in a variety of formats and sizes. They can be educational or united by a common cause, and the format is often dictated by the group’s sponsor. For example, a support group sponsored by a PFF Care Center Network site may focus primarily on education and be led by a staff member. Topics may range from pre-transplant tests to nutrition education, insurance coverage, and medications. After my diagnosis, I attended all the educational group meetings offered at Inova.
Other groups may be led by a patient or caregiver and include a guest speaker — perhaps another patient or a medical professional. In my experience, these are less formal than the educational group format. The topics may be the same, just discussed in a more conversational setting.
The size of a support group is another important factor. Educational group meetings may be required pre-transplant, meaning that all pre-transplant patients at that program or center may be required to attend. The meetings are typically lecture-style, with time set aside for attendee questions. Less formal groups are typically smaller.
When COVID-19 hit the U.S. in 2020, most support groups went virtual. However, many people had little to no experience with video teleconferencing, and certainly not Zoom. This created a learning curve not only for patients and caregivers, but also for care centers. These centers also had to ensure that their virtual support group meetings wouldn’t violate the Health Insurance Portability and Accountability Act, or HIPAA.
The groups I have described may not be right for everyone. The PFF’s support group tool can help you find the best fit for you.
My experience
I almost swore off support groups because my initial experiences were not great. Over time, I realized those groups just weren’t a good fit for me.
COVID-19 forced most groups to go virtual, as the illness represented a serious threat to patients with respiratory diseases. However, many of us found ourselves isolated.
That’s when Coffee Among Friends was born. I have led this support group since 2021. We meet monthly on Zoom and offer a coffeehouse vibe. There are no guest speakers, and the group often ranges from six to 20 people, though there’s no size limit. Attendees may be patients at any stage of their journey, including those in palliative care and hospice. We talk about our experiences and answer each other’s questions.
I also have the privilege of jointly leading the PFF Lung Transplant Community Support Group alongside Heather Kagel. The group consists of post-transplant patients, those considering transplant, and their caregivers. This monthly Zoom meeting has no agenda or guest speakers.
I think these two groups work well because they are timely, and the attendees answer each other’s questions. The uniqueness of each person’s experience is on full display in the breadth of the answers.
Support groups are not one-size-fits-all. Find the one that’s right for you. I believe everyone can benefit from groups that are a good fit. They’ve made a difference for me, and being a support group leader has helped me 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.
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