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in Health &middot April 23, 2019

HealtheVoices 2019

Janssen Pharmaceuticals paid for my travel and hotel. All opinions are my own. They did not ask me to write a blog post about my time at the conference.

For the second year in a row, I was able to attend the HealtheVoices conference a few weeks ago! This year, it was in Dallas. I had a wonderful time, and since this is my blog, I thought I would recap my time for those of you who are interested and/or who wanted to go but couldn’t make it. I’ve also included all of my livetweets of the conference, which are split into threads for each session.

Attending the HealtheVoices 2018 Conference

Boston lifestyle and health blogger Kate the (Almost) Great shares her experience at the HealtheVoices19 conference, a conference for online healthcare advocates.

Thursday (Day 0)

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On Thursday, I woke up bright and early for my 7:47 flight from BOS to DFW. It was really nice that it was a direct flight, but it was also a long flight for me. 2 hours is about the most I can comfortably do a flight, but this flight was 4.5 hours.

I arrived at my hotel by 12:30, and was surprised to see how many HealtheVoices people were already there! I checked in, but they didn’t have a room ready for several hours, so I hung out with new friends in the lobby (and finished a blog post). I finally got a room around 3:30, and after that, I rested for a few hours.

That night, the RA and ankylosing spondylitis advocates went out to dinner with some people from Janssen who work in the rheumatological space. We went to Ida Claire, which is all about Southern food! It was a fun time, but it was so busy that it was kind of difficult to hear each other. But goodness gracious do they have AMAZING sweet potato chips! I ate far too many of them.

Friday (Day 1)

Arthritis advocate and patient Kate the (Almost) Great shares her experience at the 2019 HealtheVoices conference, a conference for online health advocates.

The conference fully got underway on Friday morning! Up first was the opening session featuring the patient advisory board, real patients who helped Janssen put together the conference. One thing that was fun was we were at assigned tables, which was good because a) we got to meet new people, people we may not have met otherwise and b) it helped prevent cliques from forming. After the advisory board spoke, we did ice breakers/getting-to-know-each-other activities. Check out my live tweets of that morning’s session here:

#sponsored Gooood morning, #HealtheVoices19! We're about to kick off the opening sessions. As a reminder, Janssen paid for my travel and hotel, but all opinions are my own. I'm going to try to thread my tweets by sessions. If you're not here, follow along: https://t.co/luKgy4CtVv

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

There was also a session about resiliency on the first day. The thing about living with chronic illness(es) is we have to be resilient – we don’t have a choice. But we can use our resiliency to our advantage. There were 4 patient advocates who spoke in this session, and they share their tips for being resilient. Check out what they had to say here:

We'll shortly be getting underway with the session Rising through Esilience in Advocacy: The Power of Connection. I'll be live tweeting in this thread, so feel free to mute it/me if you're already annoyed by my tweeting lol #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

I needed to go lie down in the afternoon, and thankfully HealtheVoices understands that that sometimes needs to happen! After resting, I was able to make the YouTube session, which I was glad about because I missed it last year. This was led by Leland Candler, head of strategy at YouTube. This is one of the reasons why I love HealtheVoices – they get people from these companies like YouTube to speak at the event. We looked at the brand side of things, which I found fascinating as someone who has worked with brands, albeit on this blog and not YouTube.

I learned a LOT about YouTube videos from that session. And, of course, I tweeted it all.

We'll be starting a session on YouTube here at #HealtheVoices19 soon! As a reminder, #sponsored, etc. [THREAD]

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 12, 2019

Saturday (Day 2)

Boston lifestyle and healthcare blogger Kate the (Almost) Great shares her experience at the 2019 HealtheVoices conference, held by Janssen.

On Saturday, we started off with a session on best video practices from a patient advocate who uses YouTube as his primary platform, Josh Robbins. It was pretty cool to hear from him about video because he spoke mostly about the creative side, while the session from YouTube featured the brand side.

Josh also spoke about live streaming, which was really great to hear because for the second year in a row, he was running the livestream for HealtheVoices. So he knows a thing or two about it! You can read more about what happened in the session here:

Okay, we're about to get going on #HealtheVoices19 Day 2! As a reminder, my trip is #sponsored by Janssen (they paid for my travel and hotel) but all opinions are my own. I'll try to thread my tweets by session!

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

After that session, we started break-out sessions for the day! This means that for each 1-hour session, we had a few different options to choose from. I attending a session about turning your story into a memoir. Marisa Zeppieri led this session and shared her creative process for writing a memoir, as well as the publishing process. Part 1 of the memoir session:

My first break-out session is about turning your health story into a memoir or memoir-hybrid. As a writer, I'm super interested in this topic! #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

Part 2:

You need themes and hooks for your memoirs.
Themes: important for you/reader/publisher and are weaved throughout the book.
Hook: describe the book in a . sentence or two #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

Next, I attended a session about an introduction to podcasting. I’ve been a guest on a few podcasts now, and I really like them, but I haven’t reached a point where I feel the desire to make myself. But this session was really fascinating, and what I especially liked was it featured making an example podcast during the session.

Starting the next session shortly: I'm in Intro to Podcasting! #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

The final session I attended on Saturday was about research and getting involved as a patient! As I said in my livetweets (which are below because of course), I’ve been called “highly complex” and “interesting” by doctors, so I’m really drawn to research. It was a really great session, and we got to hear from a patient who participates in research and a doctor who has worked in research from the researcher side. That combination made for a fascinating session!

I lay down for a while and am now ready for the session on getting involved in research as a patient! Follow this thread (and, as always, the hashtag). #HealtheVoices19

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 13, 2019

That night was the annual HealtheVoices Open Mic Night! I didn’t attend due to not feeling great, but apparently it was awesome.

Sunday (Day 3)

healthevoices, healthevoices19, chronic illness, chronic pain, rheumatoid arthritis, ra, rheum, arthritis, fibro, fibromyalgia, endo, endometriosis, pots, postular orthostatic tachycardia syndrome, chronic anemia, asthma

On Sunday, we started the day with a session about Twitter from Twitter! Twitter is my favorite social media network, so I was looking forward to this session. A lot of it I already knew – I’m a Twitter expert, after all – but it was still a good session.

Last day of #HealtheVoices19! We'll be getting underway shortly with a session about my favorite thing, Twitter. Janssen paid for my travel and hotel, so #sponsored, etc.

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

The last proper session we had was about self-preservation, and it all came full circle in that it was done by the HealtheVoices patient advisory panel. They spoke about their strategies for self-care as well as self-preservation (and yes, they’re different). It was a good session for thinking about what your strategies are.

We'll be starting a session on self-preservation shortly! As a reminder you can join #HealtheVoices19 remotely through #HealtheVoicesLIVE (or by following this thread)

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

We ended with a short closing session from Barby Ingle. She spoke about how, when she got sick, she felt that she wasn’t her any more, and how she got past that. It was a really moving session and a wonderful way to end the conference.

Closing session time! Follow this thread or the #HealtheVoices19 hashtag! Going to hear from the one and only @BarbyIngle

— Kate Mitchell | Kate the (Almost) Great (@kmitchellauthor) April 14, 2019

Have you been to a conference like HealtheVoices?

Like this post? Check out:

Chronic Illness and Mental Health, How To Become an Advocate for Patients, Is Chronic Illness a Disability?, 10 Simple Self-Care Methods That Will Improve Your Life

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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July is: ⁣ - Disability Pride Month ⁣ - Juvenile A July is: ⁣
- Disability Pride Month ⁣
- Juvenile Arthritis Awareness Month ⁣
- the anniversary of when I was diagnosed with autoimmune arthritis at age 19 after 9 years of symptoms ⁣
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As you can imagine, that makes me very aware of my disability via juvenile arthritis⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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#DisabilityPride #JuvenileArthritis #RheumatoidArthritis #AutoimmuneDisease
There are a lot of reasons why you shouldn't doubt There are a lot of reasons why you shouldn't doubt someone's chronic illness, but this is one of them. ⁣
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I'm always amazed by how people can have the exact same illness or set of illnesses and still have different experiences. Sure, there will be similarities, but which symptoms are the worst, what medications you respond to, and your quality of life can vary significantly. ⁣
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It doesn't mean that one person is necessarily worse off than another; they're just different.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Kate takes a selfie. A white text box reads "Chronic Illness Looks Different in Each Person"⁣
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This basically sums up my summer so far: Harley, a This basically sums up my summer so far: Harley, a sewing project, and my foot in a cast⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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Week 28 of 2026 Weekly A very busy week! 1️⃣ Foo Week 28 of 2026 Weekly

A very busy week!

1️⃣ Foot checkup! Walking boot is on occasionally from now until September 
2️⃣ Boston 
3️⃣ IVIG
4️⃣ Dentist 🦷 All good! 
5️⃣ Not a filter - this was the Boston area the second half of the week 
6️⃣ Physical time!

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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Also, if this is how you’re finding out, I’m sorry Also, if this is how you’re finding out, I’m sorry. I’m fortunate enough to have a lot of people who care about me and this is the fastest way to tell everyone. 

Video: Kate talks to the camera while putting on makeup. There are captions. 

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Week 27 of 2026 Weekly (Delayed because last Sund Week 27 of 2026 Weekly

(Delayed because last Sunday was baaaaad)

1️⃣ Due airport difficulties, we got a few more days with Emma. Harley was THRILLED!
2️⃣ Beautiful bird/squirrel visitors
3️⃣ A beautiful Maine summer day

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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.

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1️⃣ Harley the golden retriever putting his front legs up on Emma’s legs to demand hugs.
2️⃣ A bird feeder and hummingbird feeder on a deck. There is a hummingbird at one and squirrel at the other.
3️⃣ A barn, a pond, and the Maine woods

#207 #MaineLife #MaineTheWay #NewEnglandSummer #IGMaine
Reminder: you can be proud of your disability comm Reminder: you can be proud of your disability community while wishing your body cooperated more⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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I don’t know the exact date of my RA diagnosis, bu I don’t know the exact date of my RA diagnosis, but this is from right around then in July 2010. ⁣
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When I was diagnosed, I had been having symptoms for 9 years. ⁣
- 9 years of foot pain (partially from tarsal coalition)⁣
- Arthritic damage in said food⁣
- Carpal tunnel off and on for several years⁣
- And more⁣
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I was finally diagnosed because I woke up one morning and was unable to open my jaw more than 8 mm. It turned out that I had horrible arthritic damage to my TMJs, which got me off the waiting list at MGH rheumatology. I left that appointment with an autoimmune arthritis diagnosis. ⁣
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The fact that July is not only my diagnosis anniversary but also Juvenile Arthritis Awareness Month has always seemed right. I may not have been diagnosed with JA, but given the amount of arthritis I had along with my many years of symptoms, it's generally accepted that I had it. ⁣
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This year marks 16 years since diagnosis and this fall marks 25 years since my symptoms started. It's pretty weird that so much time has already passed!⁣
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⬛⁣⁣⁣⁣⁣⁣⁣⁣⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
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ID: Kate at 19 at Fenway Park for a Red Sox game. ⁣
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Dos and don'ts for when someone in your life is di Dos and don'ts for when someone in your life is diagnosed with autoimmune arthritis! What are some that you would add?⁣
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⬛⁣⁣⁣⁣⁣⁣⁣⁣⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 10+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣.⁣
⁣
⁣⁣⬛⁣⁣⁣
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ID: "So someone you know was diagnosed with Autoimmune Arthritis". Under the Do column (indicated with a green checkmark) is:⁣
"As how they feel about it⁣
Offer specific ways to help⁣
Treat them normally⁣
Ask follow-up questions⁣
Wear a mask around them when sick."⁣
Under the don't don't column (indicated with an x in a red circle) is:⁣
"Say “At least it’s not xyz!”⁣
Say that and not follow through⁣
Assume nothing about their lives has changed⁣
Conflate autoimmune arthritis with osteoarthritis⁣
Pass your cold to an immunosuppressed person".⁣
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