Episode 48: Support: It’s not so simple. Diverse needs for difference experiences.

Join Patrice, Effie, and Rick as they share their experiences with support - which all differ per personal relationships and perspectives. That means there are different needs that we must address to help everyone. 

 

Patrice has no support from her spouse, Rick has tremendous support from his, and Effie weighs in on support needs from a single's point of view. They also talk about the needs of all others involved in our journey, as AiArthritis diseases impact every person in our lives. In turn, they too have support needs. 

 

If you are a person living with AiArthritis diseases, what's your experience with support from the various people in your life? What could be improved? What works well?  

 

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 48 – “Support”

 

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