Advocacy is hard enough as it is, but how do you handle spreading awareness when you have a condition that makes people uncomfortable to talk about? How do you approach the sensitive topics? In the May #WEGOHealthChat, Jackie and Kristen from the WEGO Health team talked you through bridging the gap and sharing their own experiences with “embarrassing” medical conditions.
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: How did you bridge the gap between “I’m uncomfortable talking about this” and “I want to be an advocate”? #WEGOHealthChat
A1: I spent a lot of time hiding my IBD diagnosis. I was embarrassed and uncomfortable. I made family lie about why I was in the hospital all the time. The problem wasn’t really other people. The problem was me. I was uneducated about what IBD was. (cont.) #WEGOHealthChat https://t.co/LB9JH511rb
— Jackie Zimmerman (@JackieZimm) May 8, 2018
1A. This is something I continue to work on everyday of recovery. Whenever I feel uncomfortable or awkward I always think: Do I want future children to go through this? That usually motivates me to speak freely about my eating disorder #WEGOHealthChat
— Kristen (@srvingofspprt) May 8, 2018
A1: My parents were in denial that it was happening, so in my late teens I had to learn to speak up for myself. When I developed a very loud voice, I realized I could use my voice to help others #WEGOHealthChat https://t.co/0Hw77XRaBj
— Kat in California (@1BendyKat) May 8, 2018
A1: it was when my symptoms were at their worst & I felt totally isolated & I thought I was the only one with my problems that I decided to find others out there who I could connect to! & decided I wanted to give a voice to people like me who think they’re alone #wegohealthchat https://t.co/nJ4ZegfYEy
— Mary (@HeadacheHeroine) May 8, 2018
Q2: Do you notice that other people are uncomfortable when you talk about your health condition? #WEGOHealthChat
2. YASSS! I never understood why. People have talked about their conditions openly and I bring up my eating disorder and suddenly it’s so tense. #WEGOHealthChat https://t.co/Y0MkE0IxbO
— Kristen (@srvingofspprt) May 8, 2018
2 cont. I also notice people don’t know what to say. I think that’s why most reactions are so uncomfortable. The reality is, it doesn’t need to be weird. #WEGOHealthChat
— Kristen (@srvingofspprt) May 8, 2018
A2: I have definitely seen people get uncomfortable but again its almost always directly related to their lack of education about IBD. Most people just think you’re pooping uncontrollably and poop makes people REALLY uncomfortable. (cont.) #WEGOHealthChat https://t.co/gS4PPdvf3n
— Jackie Zimmerman (@JackieZimm) May 8, 2018
A2: So they shy away, or try to use cute terms instead of actual sentences about what is going on inside my body. It can be pretty insulting at times. But I try to bring humor when I can to break the tension. #WEGOHealthChat
— Jackie Zimmerman (@JackieZimm) May 8, 2018
Moving on to questions two!
Q2: Do you notice that other people are uncomfortable when you talk about your health condition? #WEGOHealthChat
— WEGO Health (@wegohealth) May 8, 2018
A2: Definitely! Most people change the subject, cringe, say ”that sucks”. But it all depends on the person or how it’s presented. Others want to know how I manage or knows someone else with #epilepsy and wants to connect me. #wegohealthchat
— Whitney Petit (@CfEpilepsy) May 8, 2018
Q3: How do you approach educating the public about sensitive topics? #WEGOHealthChat
3a. I still like to use humor to educate even publicly. I think it relaxes everyone and makes the issue less serious- at least seem less serious in the moment! #WEGOHealthChat https://t.co/MsaDtayQM9
— Kristen (@srvingofspprt) May 8, 2018
3a. Cont I also try to use analogies or shows to try and explain #mentalhealth. I try to take situations or things my audience is familiar with so they can relate more. #WEGOHealthChat
— Kristen (@srvingofspprt) May 8, 2018
A3: It goes back to knowing your audience. You can get away w/more fun things when you’re talking to other patients or maybe patient families. Jokes help. Sharing your own struggles, or a story about a time where you laughed at yourself can break the ice. (cont.) #WEGOHealthChat https://t.co/StLhS3lJX9
— Jackie Zimmerman (@JackieZimm) May 8, 2018
A3: But if you’re talking to a crowd that has no relation to your condition area, it may be best to share the facts, use the jargon and go out of your way to not make people uncomfortable. No one learns well if they are uncomfortable or feel singled out. #WEGOHealthChat
— Jackie Zimmerman (@JackieZimm) May 8, 2018
A3 – ive found talking about sensitive or uncomfortable topics, in many cases, tightens bonds between patients. They realize they have support for those areas too. #WEGOHealthChat
— Must Stop MS! (@MustStopMS) May 8, 2018
A3: When I worked w/patient advocacy org I did webinars & panel sessions. Now on my own – blog/podcast/YouTube, I try to educate w/combo of my vulnerability, other “patients” experience, and healthcare professionals. https://t.co/qngYjZmnAR #WEGOHealthChat https://t.co/F7ROykZCl0
— Leslie Krongold, EdD (@Leslie_GHF) May 8, 2018
Q4: Are there still conditions outside of your own that make you uncomfortable? How do you put yourself in check #wegohealthchat
Honestly, my last 2 years at @wegohealth have really opened my eyes thanks to all you lovely folks. I feel like I have such a better understanding and perspective than most individuals thanks to all you have shared. #WEGOHealthChat https://t.co/LjSZWJ52mF
— Kristen (@srvingofspprt) May 8, 2018
A4: It almost feels shameful to say yes, but yes. I get exposed to SO many conditions through this job I see thing I never knew existed. I have learned through my life and the people I work with, that your second thought should always be “how can I learn more”. #WEGOHealthChat https://t.co/Up3PBSGZjW
— Jackie Zimmerman (@JackieZimm) May 8, 2018
A4: Oh man, yes. I’m gonna be totally honest and say, yes. It’s usually not diseases you think either. And it’s not an uncomfortable, like, “Can I catch it?” It’s usually pure confusion. So, I ask questions, I google. I fix my ignorance. SWIFTLY! #WEGOHealthChat https://t.co/r7WfT9Q0IH
— TheCrazyCreoleMommy (@CrzyCreoleMommy) May 8, 2018
A4: After what happened to my community in the late 80s/early 90s, we can never be too careful! #wegohealthchat
— Candace (@RareCandace) May 8, 2018
Q5: What are some organizations or hash tags that are doing a great job at breaking stigmas about sensitive health conditions? #WEGOHealthChat
A5: #NoStigmas really knocks this out of the park. Their name says it all. I think @NoStigmas is straight to the point and covers education along with sharing patient stories. #WEGOHealthChat https://t.co/1XkQKNeoCj
— Jackie Zimmerman (@JackieZimm) May 8, 2018
Shoutout to these folks for breaking stigmas: @stampoutstigma @projectheal @stigmafighters @healstigmaradio @lindseyhallblog @gabehoward @mikeveny #WEGOHealthChat https://t.co/MKwLnmzyjv
— Kristen (@srvingofspprt) May 8, 2018
A5 For #IBS, #Gastroparesis, & other #FGID: @IFFGD, @gimotility, @ANMSociety, & @RomeFoundation. 4 #MentalHealth: @JPBrown5 #wegohealthchat
— Melissa VanHouten (@melissarvh) May 8, 2018
Q6: What is your advice for someone recently diagnosed with a health condition that has a lot of stigma attached to it? #WEGOHealthChat
A6: So much to say about this. Think about why this condition makes you or other uncomfortable. Is it because of the location on your body? The symptoms? The way it makes you act? What is it? Then start tackling those things. (cont.) #WEGOHealthChat https://t.co/XngqYEU31b
— Jackie Zimmerman (@JackieZimm) May 8, 2018
A6: Sometimes, being very candid gets their attention and helps people to get over their own biases and systematic stigmas. Learning the severity of a disease, regardless of the location, can be a real eye opener for some people. (cont.) #WEGOHealthChat
— Jackie Zimmerman (@JackieZimm) May 8, 2018
5a. Real talk- you can’t get rid of your condition. Your best bet is to own it, and use your experiences to better the lives of others. #WEGOHealthChat https://t.co/7MgamPYc5g
— Kristen (@srvingofspprt) May 8, 2018
5a cont. Think of how much the stigma pained you, and use that as a driver to advocate so others don’t fall to the same challenges in the future #WEGOHealthChat
— Kristen (@srvingofspprt) May 8, 2018
A6: Find others who have the same condition. Finding a group familiar with (and hopefully not stigmatizing against) your illness helps kind of ease into talking about it. Plus, you can see how they address stigma against it. #wegohealthchat
— Maya Northen Augelli (@mayanorthen) May 8, 2018
A6. Stigmas often have misconceptions and prejudice sadly these effect those suffering we must change and educate with quality information and support #wegohealthchat
— Deborah Andio (@debbiea001) May 8, 2018
Don’t miss #WEGOHealthChat the second Tuesday of every month at 1pm ET!
