Episode 43: Support - It‘s a Family Affair

This week join your patient co-hosts Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, and Juana and Estela Mata, co-founders of Looms 4 Lupus, as they discuss the complicated issues surrounding supporting patients living with autoimmune and autoinflammatory arthritis diseases and their loved ones.

Looms 4 Lupus is an organization dedicated to providing an environment for education and outreach to Lupus and Fibromyalgia survivors and their family members through multiple avenues such as hands-on workshops, informational clinics, bilingual resources, and psychosomatic support groups.

On this episode, Tiffany, Juana, and Estela talk about the need for support for AiArthritis patients from their inner circle of family and friends, as well as the support needs of people who have a loved one with a chronic illness. They discuss the importance of open communication in receiving and providing support and the need for raising global awareness for AiArthritis diseases so that friends and family members of people living with these diseases can better understand their loved ones needs and limitations.

The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. One of the most persistent problems facing patients is a lack of understanding by the rest of the world. Too often people who are suffering are dismissed, ignored, or belittled because their family members, friends, or doctors do not recognize the symptoms of their disease. You can be a part of helping us change that. We need you to share your story.

 

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!

 

If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.

JOIN TODAY!

 

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).

 

 

Show Notes: Episode 43 – “Support - It’s a Family Affair”

 

00:53 - Tiffany welcomes listeners

01:30 - Tiffany is joined today by Estela and Juana Mata, co-founders of Looms 4 Lupus

2:40 - Today’s topic is support for loved ones who are AiArthritis patients

2:47 - Tiffany explains the way the talkshow and the AiArthritis organization approaches projects to help improve the lives of AiArthritis patients

4:18 - Estela and Juana discuss their experience as a family supporting Juana’s battle with Lupus and co-morbidities

5:48 - Family members of AiArthritis patients also require support

9:43 - Support may look very different from one family to the next or even among different members of the same family

13:57 - Family members may need assistance to find the best way to help and support their loved one living with an AiArthritis disease

16:30 - Diagnoses that are more familiar to people like cancer tend to illicit immediate support because people may feel more empathy for conditions they understand

18:18 - AiArthritis patients may face judgment from others because people don’t understand their disease or their limitations

19:01 - Patients sometimes feel pressure to be performative with their illness so that their inner circle will be more supportive

22:52 - Communication between the patient and the family is critical to establishing adequate support

31:24 - It may be more difficult for male patients to ask for or accept the help they need from their loved ones

32:28 - Counseling and support groups can be very beneficial in helping families navigate figuring out how to support each other effectively

35:39 - To share your story on this topic, visit our website at aiarthritis.org/podcast

35:51 - If you are living with an AiArthritis disease, check out the sister site to this podcast at aiarthritisvoices.org and meet any of the Voices 360 co-hosts

36:28 - You can also find Estela and Juana @looms4lupus on all social media platforms or by visiting their website at looms4lupus.org

37:27 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org