Living with a chronic illness not only means dealing with a lifetime of complications but it also means endlessly fighting off the stigma associated with chronic illness.
How do you combat the stigma of chronic illness? Is it through education and awareness? Is it your role as a Patient Leader to combat this stigma? What would you want the world to know about your life with chronic illness? These are the questions we discussed in the March #WEGOHealthChat with our cohosts @SimonRStones and @MikeVeny.
If you’d like to read the chat transcript you can find it here or you can get an overview of the chat below.
Q1.What is an example of a stigma you’ve experienced due to your chronic illness?
A1: That Crohn’s is purely a “bathroom” disease and my problems can be solved merely by diet changes #wegohealthchat
— Quin Turner (@QuinlanTurner) March 13, 2018
A1: Ooh where to begin!? Definitely the invisibility of my conditions, and societal stereotypes. I appear to be a healthy, happy, young man – therefore there is nothing ‘wrong’ with me (rolls eyes) #WEGOHealthChat https://t.co/tj0pEbBEcc
— Simon Stones (@SimonRStones) March 13, 2018
A1: People see my posts on Facebook and think because one photo shows me out and enjoying life and think I must be fine and always in that “state of mind.” #WEGOHealthChat
— Leslie Krongold, EdD (@Leslie_GHF) March 13, 2018
A1: I have lived with #mentalhealth challenges (aka #mentalillness) my entire life. I’ve experienced #stigma in the form of stereotypes and prejudice. A lot of that comes from family.
— Mike Veny (@MikeVeny) March 13, 2018
Q2: Where do you think this stigma comes from?
A2: Ignorance, fear, and our often far too long and winding roads to proper diagnosis. #WEGOHealthChat
— MSandMeRadio (@MSandMeRadio) March 13, 2018
T2- For decades We’ve been taught to believe what we see. Even in Medicine/CT/MRI it happens regularly. If a doc cant diagnose it, why should anyone else believe it. #WEGOHealthChat
— Becky Brandt RN (@bbhomebody) March 13, 2018
A2 Misguided belief that sickness = weakness of character or lesser worth. #wegohealthchat
— Melissa VanHouten (@melissarvh) March 13, 2018
A2 I think stigma comes from not knowing. Prior to going into treatment myself, I just assumed anyone who checked themselves into rehab was crazy- but they aren’t. They’re humans- just like you and me. The minute I found myself there I realized that #WEGOHealthChat
— Kristen (@srvingofspprt) March 13, 2018
Q3. Is it our job as Patient Leaders to educate the outside world on breaking these stigmas or should the onus be on them?
A3: The onus should never be on #PatientLeaders – but for some, they do make it their job to educate the world – which is great and does make a difference! We are powerful and can have an impact – but it’s really everyone’s job to change the way the world thinks #WEGOHealthChat https://t.co/2KAsQZBTKZ
— Simon Stones (@SimonRStones) March 13, 2018
I believe that we need to take ownership and responsibility for 1) Being aware of we may stigmatize others without realizing it. 2) Being persistent and intentional about having uncomfortable conversations with #haters. @SimonRStones #WEGOHealthChat
— Mike Veny (@MikeVeny) March 13, 2018
A3: Yes, I believe it is our job to educate about the many debilitating conditions and chronic pain. Just because you cant see it, doesnt mean its not real and the more we can educate from experience the more we will change the stigma. We are the teachers! #WEGOHealthChat https://t.co/CxkXnQOc8e
— Ken Taylor (@KenRayTaylor) March 13, 2018
A3: It’s a collaborative effort. I think most people face stigma at some point in their lives. It’s important to convey that stigma of any kind hurts. Patient leaders should suggest improvements, and work with others to spread the word among peers, family, etc. #WEGOHealthChat
— Shahd (@_shahdh) March 13, 2018
Q4. What are ways that you have worked to combat the stigmas associated with your chronic illness?
A4: I keep brochures in my car (describing psoriatic arthritis) When I get a look/somebody actually opens their mouth to tell me an opinion about why I shouldn’t be parking in a handicap spot/ shouldn’t be going through the handicap door… I hand them a brochure#wegohealthchat
— The Skin I’m In (@EllieTrinowski) March 13, 2018
A4: 1. Working on my own shame first through self-care. 2. Making #mentalillness and other invisible illnesses a part of everyday conversation. 3. Looking for teachable opportunities to educate others. #WEGOHealthChat
— Mike Veny (@MikeVeny) March 13, 2018
A4: Getting people to listen – even just for a minute. I’ve seen people with tears in their eyes after illustrating what it feels like to be me – and I often believe that it can be one interaction which may well change people’s perceptions thereafter #WEGOHealthChat https://t.co/FocAgXIrcu
— Simon Stones (@SimonRStones) March 13, 2018
A4. 1st, I just be the best me I can be, I understand that some wont get it n this world, but if I keep being me & doing my best that its enough & that they will know n this life of the next, 2nd, I create tools so for those who want to learn & know better… can! #WEGOHealthChat https://t.co/edZynZJsYI
— Barby Ingle Official *\O/* (@BarbyIngle) March 13, 2018
Q5: Thinking of other condition areas and who we can learn from, are there online communities out there truly bringing the wrecking ball to their condition’s stigmas?
A5: Yes! The cancer community has been a group of fierce advocates that have transformed the stigma around cancer. Case and point, notice the incredible empathetic care cancer patients receive versus other illnesses. We can learn a lot from this community as #patientleaders
— Mike Veny (@MikeVeny) March 13, 2018
A5: To Write Love on Her Arms is doing great things for mental health and stigma. They hit the nail on the head! #twloha #WEGOHealthChat
— Laura Sanscartier (@coffeenlithium) March 13, 2018
A5: Speaking from a personal perspective, particularly here in the UK, I think there’s so much we can learn from those with cancer. There have been lots of campaigns to change perspectives and I certainly feel that we’ve seen a shift in people’s understanding #WEGOHealthChat https://t.co/D4XLNFE5pP
— Simon Stones (@SimonRStones) March 13, 2018
A5 @powerofpain is sharing patient stories thru #iPainFeaturette short videos that put a face on pain. https://t.co/1viZHFfN0t #chronicpain #osteoarthritis #WEGOHealthChat
— Amanda (@LAlupusLady) March 13, 2018
Q6: Are there ways that we can work together, across condition areas, to combat chronic illness stigmas?Are there any hashtags or campaigns that you’re aware of that work to combat chronic illness stigma?
A6: #TransformingStigma #BustStigma #NoStigmas #StigmaFreeZone – I just published a book on it, too.
— Mike Veny (@MikeVeny) March 13, 2018
A6: YES, YES, YES! Our voices are so much stronger together – often when many of the challenges we face cut across our specific conditions. Today’s tweet chat is just one example of how we are just phenomenal together as one voice! #WEGOHealthChat https://t.co/Dwj9tRD3zv
— Simon Stones (@SimonRStones) March 13, 2018
A6: definitely!! I’m always looking for ways to collaborate with others who have similar conditions as me to advocate together. There’s power in numbers! #WEGOHealthChat https://t.co/mMip4TPGmk
— Mary (@HeadacheHeroine) March 13, 2018
Q6a. My Fav hashtags – #HopeIsTrue #CheerleaderOfHOPE #GenerationP #IHaveTheNerveToBeHeard #CanyoUheaRmE #DoYouHaveTheNerveToBeHeard #NERVEmber #iPain #iPainLiving #iPainPOP #BreakthroughCrew #BeYourOwnBestAdvocate #GoOrange #iPainFeaturettes #ChronicPain #WEGOHealthChat https://t.co/OuNwW5VY3J
— Barby Ingle Official *\O/* (@BarbyIngle) March 13, 2018
A6A: Here’s a few! #ChronicLife #ChronicIllness #SpoonieLife #invisibleillness #WEGOHealthChat https://t.co/lDJb72aQ2y
— Simon Stones (@SimonRStones) March 13, 2018
You can join our #WEGOHealthChats on the second Tuesday of every month at 1pm ET. If you’re unfamiliar with how to participate in a Twitter chat, we created this handy-dandy guide to get you up to speed.
