Show Notes: Episode 12 ”Invisible Disease”

01:02 – Tiffany welcomes Co-Host, Effie Koliopoulis

01:50 – Effie discusses her story and creating the blog, Rising Above RA

02:38 – In October of 2019, Effie released a series of videos called “I Am Invisible No More” about living with invisible illness

06:24 - Invisible illness is a major healthcare issue that is not isolated to the AiArthritis Community

07:20 - AiArthritis patients experience symptoms internally from onset, in many cases years before the symptoms are visible to others

08:06 - Arthritis is the #1 cause of disability 

08:14 - Statistically patients become too disabled to work within 10 years of symptom onset

09:49 - Delays in diagnosis and treatment are improving, but they still significantly impact longterm outcome of patient health

10:30 - The average age of onset for adults is 20-40

10:37 - Effie was diagnosed at age 18 with JIA, but she may have had symptoms as early as 5th grade

14:28 - Everyone with an AiArthritis Disease will begin with invisible symptoms unless they happen to start with fever or rash

15:38 - Almost 50% of respondents to our organizaton's poll reported having conflict with family members because they are not believed 

18:50 - People may become irritated with you for opting out of social occasions, but you have to do what is best for your health

20:01 - It can take time - in many cases many years - for patients to come to terms with their own physical limitations 

22:50 - People can be very judgmental and assume someone is unfriendly if they are too sick to participate in social activities 

24:38 - AiArthritis diseases are very unpredictable so patients’ physical limitations may change significantly in short periods of time, which can be difficult for others to understand

25:15 - People may be independently ambulatory at times and require mobility devices at other times, which may make some people think they are “faking”

25:50 - Some people use mobility devices proactively to protect their joints and avoid the onset of flares

26:45 - Some people may not take full advantage of accessibility aids out of fear of confrontations with people who do not believe they need them

29:48 - The unpredictability of AiArthritis illnesses contributes to their invisibility

31:15 - Effie tells a story of a damaging confrontation she had with a police officer because she was using a disability parking placard

33:18 - Tiffany tells a story about a person leaving a note on her vehicle telling her she shouldn’t be parking in a reserved spot

34:33 - Many people feel the need to be more performative with their limp or disability as a defensive mechanism to avoid confrontations with strangers

36:00 - Some people believe they are performing a social service by harassing people with invisible disabilities because they think they are protecting people who are “really disabled”

39:40 - Communicating needs to teachers, family, and friends is essential for young people with AiArthritis diseases to thrive

40:47 - The only way for people to understand your needs when you have an invisible disease is to communicate those needs to others

41:06 - 78% of poll respondents said they have issues at work because coworkers do not understand their limitations

41:24 - 55% of poll respondents say they choose to remain invisible

43:01 - In Europe, employers are legally required to accommodate employees with rheumatic diseases

43:40 - 20% of poll respondents reported concealing their disease from their European employer out of a fear of being fired

45:20 - Many people also conceal their disease out of a fear of being passed over for career promotion

45:56 - Some people also do not want to identify as a person living with an illness or disability

46:16 - 78% of poll respondents said they have difficulty communicating what they are experiencing to others in a way that they can understand 

47:17 - Dating may also be difficult for someone living with an invisible disease 

49:36 - Invitation to share your stories, tips, questions, and ideas about invisible disease by emailing us at podcast@aiarthritis.org or visit AiArthritis.org/podcast

52:58 - Share your stories of invisible disease on social media @ifaiarthritis on all platforms

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