Support: It's not so simple. Diverse needs for different experiences.
Full Episode #48
Air Date: November 1, 2020
Únete a Patrice, Effie y Rick mientras comparten sus experiencias con el apoyo, las cuales varían según las relaciones personales y las perspectivas de cada uno. Esto significa que existen diferentes necesidades que debemos abordar para ayudar a todos.
Patrice no recibe ningún apoyo de su cónyuge, Rick recibe un apoyo tremendo del suyo, y Effie da su opinión sobre las necesidades de apoyo desde el punto de vista de una persona soltera. También hablan sobre las necesidades de todos los demás involucrados en nuestro viaje, ya que AiLas enfermedades artríticas afectan a todas las personas en nuestras vidas. Por lo tanto, también necesitan apoyo.
Si eres una persona que vive con Ai¿Qué experiencia tienes con el apoyo de las personas que te rodean en relación con la artritis? ¿Qué se podría mejorar? ¿Qué funciona bien?
¿Formas parte del círculo íntimo de un paciente (pareja, hijo, padre, familiar, amigo, etc.)? Si es así, ¿cuáles son TUS necesidades de apoyo? ¿Qué te gustaría aprender sobre cómo apoyar a la persona que conoces que vive con Ai¿Enfermedades artríticas?
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
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Show Notes:
00:53 - Patrice welcomes listeners
01:28 - Patrice is joined by Effie and Rick
02:17 - Today’s episode is about support networks
02:43 - Patrice shares her story of living with AiArthritis without any support from her family
03:31 - Patients with AiArthritis may not be able to divorce their spouse if they rely on them financially or for health insurance
04:04 - The national divorce rate in the US is 40%, but it goes up to 75% when one spouse is chronically ill
04:25 - Women diagnosed with chronic illness are 6x more likely to be divorced than a male patient
05:00 - Patrice has built her own network of support among fellow patients since it wasn’t available from her family
05:51 - Volunteering may also provide an opportunity for patients seeking emotional satisfaction
06:19 - Rick shares his support story of being married to a supportive spouse
07:10 - For Rick, the point where he had to cease working was one of the most emotional times for he and his wife
07:59 - Rick doesn’t believe he could live without his wife’s support
09:19 - Effie shares her story of being a single individual in need of support for JIA/RA
10:24 - Loved ones of patients also need support
11:17 - AiArthritis diseases don’t just impact the person who has it, but also everyone around them
11:33 - The co-hosts discuss the issue of demonstrating grace in relationships
12:58 - Patients may feel they need to educate their children in particular since there may be genetic components to AiArthritis Diseases
13:27 - Patients may be plagued by guilt or regrets and need to forgive themselves before they can show grace to others
14:45 - Effie explains Spoon Theory
16:27 - It’s important to forgive other people for not understanding what it is like to live with a chronic illness
19:27 - Knowledge about autoimmune diseases - especially the fact that they aren’t a result of poor choices - is much more available now than it was in previous decades
20:33 - Older generations may be less likely to share about their diagnosis or ask for or offer support
22:36 - An AiArthritis diagnosis doesn’t necessarily define an individual
23:05 - It might be helpful for future generations of a family if a patient keeps a journal of their diagnosis and treatment journey so that this information and knowledge from experience isn’t lost
25:29 - Patrice thanks Effie and Rick for joining in the conversation today
25:43 - All patients and parents of juvenile patients are invited to join our sister site AiArthritis Voices at aiarthritis.org/aiarthritisvoices and meet any of the Voices 360 co-hosts or participate in the conversations about our episode topics
26:15 - Patrice thanks listeners and invites them to get involved in any of our projects by visiting us on the web or all social media platforms @IFAiArthritis
26:38 - Find Rick at RADiabetes.com or on Twitter (@LawrPhil) or on Facebook
26:51 - Find Effie at RisingAboveRA.com or on Twitter and Instagram @RisingAboveRA
27:29 - Please consider supporting the show by donating @ aiarthritis.org/podcast
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.
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!
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our 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.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?
Patrice Johnson
Rick Phillips
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