#HighRiskCOVID19: Reality Check from the Immunocompromised Community

Welcome to AiArthritis Voices 360. This episode join your hosts Kelly Conway and Charis Hill to discuss COVID-19 and the potential impact on the AiArthritis Community. This is the third episode in a breakout series on COVID-19 and what you can do to protect yourself during the pandemic. They will discuss raising awareness for the risks experienced by disabled and chronically ill people during the pandemic and what you can do to join the movement.  They also dive into being discriminating about the reliability of sources when reading about COVID-19 and prioritizing your mental and emotional wellness during social isolation.

 

 

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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).

 

Show Notes: Episode 21 – “High Risk COVID-19”

 

00:52 - Kelly welcomes listeners

02:23 - Kelly lives with Rheumatoid Arthritis

02:37 - Today’s topic is the high risk community of AiArthritis patients living during a COVID-19 outbreak

02:45 - Kelly welcomes patient co-host, Charis, who lives with Ankylosing Spondylitis

03:19 - In the beginning of the outbreak, the messaging focused mostly on the fact that children were not at risk and the elderly and people with compromised immune systems were in the most danger

05:50 - Charis drafted language in a social media post that was adopted by their local mayor to communicate to the public that individuals at increased risk from COVID-19 needed others to practice socially responsible behaviors to help thwart the spread of the virus

06:50 - Charis has been spreading the message that it is everyone’s job to stay home so that everyone doesn’t get sick instead of the idea that immunocompromised people should self-isolate if they want to be safe

07:44 - All people need to stay home as much as possible to prevent asymptomatic carriers from spreading the virus to vulnerable members of our society without knowing it

08:51 - Charis explains the origin of #HighRiskCOVID19

12:34 - It’s important to put a face to the category of “high risk people” so that the public understands who all they are protecting when they are practicing social distancing

14:57 - Before her workplace closed, Kelly was approached by multiple people concerned about whether she was at risk, but she didn’t know the answer

16:12 - CreakyJoints is a great resource for reliable information and support during the COVID-19 pandemic

16:36 - If you are concerned about conflicting information, you should consult with your personal physician who is familiar with your condition about the best way to proceed

16:58 - The Spondylitis Association has also issued a resource document for Spondyloarthritis patients about COVID-19

17:11 - Check sources on any articles you find online because there is a lot of misinformation floating around the internet

17:26 - Patients living with chronic illness and disabilities may be more prepared than the general population to avoid infection during a pandemic

18:16 - We know what to do to protect ourselves, but we are also relying on the community to keep us safe because this virus is so dangerous for disabled and chronically ill people

18:28 - Charis and Kelly share the end of life plans they have made in case they contract a fatal case of COVID-19. These plans allow them to live without anxiety, NOT because they are being pessimists

20:40 - It’s important that everyone be patient and kind with people who are still working - especially healthcare professionals

21:22 - If you are healthy and have been stockpiling medical supplies, please consider sharing them with people who need them now

26:05 - Everyone knows someone who works in the healthcare, service, or food industry putting themselves at risk, and the least we can all do is to avoid unnecessary trips out

27:04 - You can be a superhero right now by doing nothing and staying at home

27:46 - People probably need to take breaks from COVID-19 news to preserve their mental health

30:43 - People need to prioritize social connections (while social distancing) to preserve their emotional wellness

32:05 - People who deny the seriousness of this virus may be clinging to that belief to manage their own anxiety

33:08 - Schools and employers have been claiming for years that remote work or remote learning is not possible, but now it is suddenly possible when able-bodied people need it

33:58 - Follow #Accessibilityforableds to see how frustrated disabled people are that the accommodations they’ve been told were impossible are now available to everyone

34:18 - Disabled people hope that these distance policies will remain possible after the virus

36:42 - This is the first time in a long time that teachers have had the freedom to educate their students without having materials forced on them by publishers, politicians, and administrators. Kelly hopes that will be a catalyst for change in public schools after the virus

38:40 - There is no one look for being high risk or vulnerable

39:29 - Many of the symptoms that people with AiArthritis diseases live with every day are documented COVID-19 symptoms, and that can cause anxiety for people who are trying to decide if they are flaring or sick

40:12 - Get in touch with your doctor if you think you need to be seen because any trip to urgent care or the ER is likely to expose you to the virus

44:04 - We probably won’t know much conclusively about the virus for several years because researchers will need to repeat experiments multiple times and have research peer reviewed before it will be accepted as fact

45:29 - Kelly thanks Charis for taking the time to do this episode despite being ill

45:54 - The COVID-19 special episodes are currently airing during the regular AiArthritis Voices 360 dates and times, but they will soon branch out into their own series so that patients wishing to take a break from COVID-19 news can listen to our regular show

46:35 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis

47:09 - We will also have many COVID-19 resources available @ aiarthritis.org/COVID19

47:19 - 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