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Support: It's not so simple. Diverse needs for different experiences. 

Full Episode #48

Air Date: November 1, 2020

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? 


Are you part of a patients inner circle (significant other, child, parent, family member, friend, etc.)? If so, what are YOUR support needs?  What would you like to learn about supporting the person you know living with AiArthritis diseases?


LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION! 

(Scroll down the page to learn how!)

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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.


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).

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. 

Join AiArthritis Voices

Your Co-Hosts & Guests: Who is at the table this episode?

Patrice Johnson

Originally diagnosed with Rheumatoid arthritis 9 years ago, Patrice now has an undifferentiated diagnosis. She has also been told she has had Osteoarthritis for 35 years. Along the way she developed some comorbidities which include severe hearing loss, a Baker's cyst, osteopenia, and a vein ablation. Patrice lives in Northern California and have 2 grown children and 5 grandchildren. She loves to travel, read, and cook.  

Effie Koliopoulos
Effie is a writer, blogger, and award-winning patient advocate. Her interest in advocacy began a decade ago when she interned for the Arthritis Foundation in Chicago. Since then she has expanded her outreach by working with various organizations and attending the American College of Rheumatology Conference in Washington D.C., to discuss the concerns and needs of the arthritis community to legislators. She created her blog, Rising Above rheumatoid arthritis in 2016 in order to share her story, connect with others and raise awareness for the community. Effie has been featured in places such as, Yahoo Lifestyle, Everyday Health, Health Central, WEGO Health, NewLifeOutlook, theRAconnection, and The Mighty. She is born and raised in the Chicagoland area, where she currently resides and is working on her debut children’s book. Her recent three-part film series, I Am Invisible No More can be viewed on her YouTube channel, RA and Myself.

Rick Phillips

"Lawrence 'Rick' Phillips has spent over 30 years in local government and local school district administration in Indiana. He has, at various times, been a Director of Finance, City Controller, Personnel Director, Development Director, and all-around computer guy (that position lasted one year). He grew up and lives in central Indiana with his wife Sheryl of more than 40 years. They have two sons and three grandchildren. Rick was diagnosed with type 1 diabetes in 1974 and RA in 2000. He was also diagnosed with ankylosing spondylitis in 2105. Rick has used six biologic medications and has had several surgeries related to RA.

He was diagnosed with AS in 2016 and at that time He vowed to live until He have at least five autoimmune diseases. Hey, a man needs a goal. He loves to ride his bicycle, not far or fast, but for fun. He often writes about RA and diabetes issues on his website, RADiabetes.com. Rick will discuss his grandchildren, given even a slight chance. He credits his father and years of work in the public sector for his dry sense of humor. Rick earned his BS and MS from Indiana University in 1979 and 1989, respectively and an Ed.D. from Nova Southeastern University in 2012. "

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