The Persuasive Case for Support Groups: Leaders Share Benefits When Recruiting Newcomers

Attending support group meetings for the first time may be easy for some people, but for others, being a newcomer to a support group can be intimidating. Patients and their loved ones may need some time to mentally prepare themselves for talking about PH with others in a support group environment, according to Tina Silks, leader of the San Luis Obispo, Calif., group.

For those who are hesitant, Tina offers gentle encouragement, asking people first to consider just visiting the group. “I tell them to come, try it, just sit and listen. You don’t have to speak. It doesn’t have to be scary.” Whether these people attend or not, Tina calls them whenever a meeting is coming up so they know they are always welcome.

Continuously reaching out to new people is important to keeping PH support groups vibrant. To help our PH community bring in new members who may be wavering, PHA asked support group leaders and coleaders from around the country about ways they have benefited from the group. Their thoughts may help you bring new members to your local group.

Here's what you had to say.

Nicole Cooper, Charm City Exhalers of Baltimore, values being with and learning from other patients.

Nicole Cooper“Being with other PH patients who have had PH longer than I have and who have gone through different scenarios has been the most beneficial part of my support group experience. It was refreshing to discover that I was not alone and that I was going to have a future. I have family and friends who want to help me, but I can’t talk to them about why I can’t breathe, not the way I can with others with PH.”

Katherine (Joy) Morgan, PH Support Group, Central Florida, mentioned developing and promoting self-advocacy skills and making close friends.

Katherine (Joy) Morgan“My involvement has helped me become my own advocate in fighting PH, and I encourage others to be their own advocate as well, to learn more about PH beyond what our doctors are telling us. I am more passionate in my involvement now more than ever. Also, before each meeting, I most look forward to seeing my group members. They are like family to me, and we actually have fun together.”

Marla Shaffer (Hawaii) noted the caring bond between group members.

Marla Shaffer“There's a certain level of understanding and compassion with our Hawaii support group. I'm sure this is true for other areas of the country as well. This is a huge benefit that has been there from the very beginning. The level of friendship and support just continues to grow as we take this PH journey together.”

Elsa Dasigo, PH Support Group, Hawaii, cherishes the strength and coping skills she has gained.

Elsa Dasigo“Through being in a support group, I have become more aware of how to deal with my PH. I know that I don’t need to face the fears of this rare and incurable disease on my own. I feel that everyone's involvement in sharing our knowledge and symptoms with each other helps make each of us a little bit stronger. It’s even more valuable to know that we make a difference in each other’s lives.”

 

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

For the best viewing experience of this site, it is recommended that you use Internet Explorer 8 or 9 or Firefox.

© 2014 Pulmonary Hypertension Association. All Rights Reserved.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.®

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.