Connect with others through IDF Caretakers Support Group

Jodi Taub doesn’t hesitate when asked what’s at the forefront of people’s minds as they join in the discussion during the Immune Deficiency Foundation (IDF) Virtual Caregivers Support Group.

“The pandemic’s not over for us, so a major topic has been how to deal with the increased isolation,” said Taub, a psychotherapist living with primary immunodeficiency (PI) and IDF Virtual Caregivers Support Group facilitator.

“Every single person, no matter what role they are playing, whether that be as a caregiver to young children, caregiver to adult children, or a care partner like a spouse, and no matter what the diagnosis, everybody is struggling with the isolation – and the changes they’ve had to make in their lives as they participate and function in the world.”

The IDF Virtual Caregivers Support Group provides a confidential online platform for adults caring for loved ones with PI to connect with others who share the same experiences. The no-cost meetings occur once a month on Thursdays at 6 p.m. EST. The next meeting is set for Dec. 15, 2022. Participation requires monthly registration and initial needs assessment. The IDF Virtual Caregivers Support Group is one of several support groups offered by IDF.

The group has grown steadily since starting in the fall of 2021, and in February, IDF will divide the existing group into two – one to serve parents of persons with PI and the other to serve spouses and partners of persons with PI.

Members of the IDF Virtual Caregivers Support Group range in age from 25 to 70, and they care for loved ones with a variety of PIs such as common variable immune deficiency (CVID), severe combined immunodeficiency (SCID), hypogammaglobulinemia and X-linked agammaglobulinemia (XLA).

Despite varied backgrounds, members of the IDF Virtual Caregivers Support Group can relate with one another about how the pandemic has impacted their relationships with other people, said Taub. Group members remain at home much more than before the pandemic, which limits their time with family and friends. Even when social interactions occur, loved ones sometimes eschew the need for COVID-19 precautions, like testing before visits or mask-wearing.

“The support group has been a wonderful place for all of them to find this connection when they’re feeling disconnected from other people in their lives. Everyone talks about how the pandemic has changed relationships with their own family members and friends and how a lot of times people won’t meet them on their own terms, and it’s been hard,” said Taub.

“Before the pandemic, they did not feel the same level and weight of stress, and a lot of them feel like they are carrying an additional weight as they walk in the world. So that’s been a common theme. I don’t think we’ve had one group that has not brought that up and it has not been the center of our conversation – per the group member’s request.”

Another issue group members discuss is caregiver burnout leading to fatigue, depression, and anxiety. Pre-pandemic, caregivers could participate in outlets like going to the gym, traveling, or having dinner with friends. Now, visiting those public spaces puts their loved ones with PI at risk.

“Their communities have shifted, and their own support systems have decreased for themselves, and so that’s led to feeling even more isolated and alone,” said Taub.

The Caregiver Support Group provides a safe space for participants to discuss how they experience pressure as caregivers and offers them the emotional support they may not find elsewhere.

“I’ve had people say in this group that they feel that they can talk freely and that other people who are not caretakers of a person with PI just do not get what they are going through. It’s so helpful to have other people they can just talk to, and they don’t have to explain it, and they don’t have to worry about judgment,” said Taub.

Some group members expressed that, at first, they felt guilty about reaching out for assistance because they were not the ones with PI but agreed that they were glad they did.

“A lot of them said they didn’t realize they needed support until they got it, that the process of having it and seeing how it was helpful allowed them to understand that they really did need it and helped them to understand better how they were feeling because they felt like they had been in crisis mode and weren’t as aware,” said Taub.

One person said that time in the group improved their relationship with their partner.

“They felt like having the outlet to connect with others that are going through the same thing made them more empathetic towards their partner, and that it normalized some of the things that they were doing because no one else around them was taking the precautions in the same way,” said Taub.

A psychotherapist who maintains a private practice in New York City, Taub has provided therapy for people coping with chronic illness and disease, including PI, for over 24 years.

Diagnosed with common variable immunodeficiency (CVID), Taub joined the IDF community in 2007 and shared her mental health expertise during the teen programs at IDF conferences, where she led coping skills groups for youth and provided lecture series for caregivers. Taub also edited the adolescent and young adult section of the IDF Patient and Family Handbook (third edition), participated as a guest in IDF podcasts, and narrated a mental health video for the SCID Compass program. Her other activities include serving as chair for IDF Walks for PI in New York City and participating in IDF Advocacy Day.

“I love leading the Virtual Caregivers Support Group, I really do,” said Taub. “And I think it’s helpful for group members to know that aside from being a therapist, I am living with PI, and I’ve had to go through these experiences too.”

Taub said that while some group members join because they’re seeking support, others enjoy listening and providing support, and friendships have developed outside of the group. She encourages any caretakers interested in the group to visit and see how they like it.

“Give it a chance. You don’t have to jump in right away if you don’t feel comfortable. It may take you a while to feel like you want to participate but give yourself the opportunity to try to connect with others because it just might help,” said Taub.