A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how!
A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them! You're invited to help us continue developing this aid - find out how!
*All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process). Learn more about our process and mission.
Show Notes:
0:55 - Welcome & introduction by Tiffany Westrich-Robertson
1:28 - Introductions to Deb and Estela
1:45 - Estela is a Founder of Looms 4 Lupus, an organization that focuses on the supporter network for lupus patients and others with chronic illness.
2:34 - Deb is a recurring co-host and long term dedicated AiArthritis volunteer.
3:35 - Tiffany explains the mission of the show to put a topic 'on the table' OR revisit the topic, which is what this episode is about. It is based mostly on Episode 43 It's a Family Affair (https://www.aiarthritis.org/talkshow-ep43). This is a step “5” in our six step process (learn more about the stepshttps://www.aiarthritis.org/about-us).
4:54 - The support person can be a family member or a friend, who will have diverse support needs depending on their personalities and coping skills (among other things).
6:11 - Tiffany explains the addition of the #360it to the episodes. Expanding the show to as many formats as we can to keep the conversation going, so that all people can truly have a seat at the table.
8:35 - Estela discusses the impact of Juana's diagnosis, including the different reaction of the family members.
11:08 - They talk about the importance to figure out roles and how to give support from each perspective and personality. This includes "Supporting the support" - helping the spouse and the children figure out what support they need. Also, what can we all do to address support needs for different people?
12:25 - Deb shares a similar story about her family members response to her diagnosis. (her mothers guilt, and the “cheerleader” role of family members).
13:40 - Communication plays a big role because needs can vary so much and change over time.
14:04 - Sometimes people need to go outside of their family circle to get the support that they need. Friends can be your primary supporters.
15:40 - Deb shares a story about an early experience with her husband, who left her after surgery with a toddler and other complications. While she 'gave hints' he should come home, she learned he needed more information regarding how she needed to be supported.
19:20 - Tiffany talks about the evolution of roles and communication dynamics with your support systems over time. She introduces the start of a guide to help identify your support network and the roles they play in the journey. Step One: Who is in your Support Network?
21:28 - Deb’s provides examples of her support system, which includes her extended family members, friends, and church family. This leads to Step Two: Assign Roles.
23:04 - Estela and Tiffany expand into Step Three: What are the needs of each person? Once you identify your supporters then determine who you think you need to go to for each need. Be sure to communicate with each person so they are clear about your expectations.
30:23 - Tiffany mentions considering Step Four: Evolution of Needs, which includes disease journey shifts and new people entering your Support Network.
33:26 - Remember, it's a learning curve for everyone. There will be trial and error but just be patient with each other. People take their own meaning from things, so miscommunications happen. Have a discussion (even repeat back to confirm) to make sure everyone is on the same page. You have to reassess every time to prevent resentment and misunderstandings. Not everyone can fill every support role- and that's okay.
38:32 - Deb addresses disease misunderstandings as a main cause of patient needs for support. She suggests developing a QR code for people to immediately have access to information on our conditions.
40:46 - They discuss additional things to consider, such as learning more about the disease, symptoms, treatments, as well as considering various means of providing support.
47:30 - Tiffany invites listeners to contribute to building this tool and using it.
VIEW OUR OUTLINE HOW TO START YOUR SUPPORT AID HERE
48:00 - Tiffany explains how we are going to "#360it" this episode.
49:08 - Estela's sister, Juana, will host one of the #360it spin offs, focusing on the supporter switch (when the patient turns into a caregiver, for example, motherhood.)
50:16 - #360it spin off episodes can go anywhere - Twitter chat, tiktok, Facebook posts, mini episodes - and can be done by ANYONE! If you want to add to this conversation by sharing your recommendations or stories let us know. You can also just tag us on social @IFAiArthritis and use the hashtag #360it.
52:00 - You can find Estela and Looms for Lupus on Instagram, Twitter, and Facebook @looms4lupus, and Estela on Instagram, Twitter, and Facebook @estelamata. Don’t let the name fool you, they focus on all autoimmune conditions, overlapping mental health conditions and are here to support you. What all these conditions have in common is the need for all of us to support one another!
Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices.
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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on Feedspot!
