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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)

reviewing Ida Claire, Dallas, Dallas restaurant, reviewing Dallas restaurant, Ida Claire Dallas, Ida Claire Dallas review, Ida Claire review

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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I personally have rheumatoid arthritis, fibromyalg I personally have rheumatoid arthritis, fibromyalgia, and Sjögren's syndrome, which makes 3 forms of arthritis.⁣
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May is Arthritis Awareness Month, which is the perfect time to remind people of these facts. Here's today's fact.⁣
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Like, comment, and share to spread awareness 💖 ⁣
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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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⬛⁣
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ID: Fact or Fiction? Let's Check! ⁣
Fiction⁣
Arthritis means only 1 thing.⁣
Fact⁣
There are over 100 kinds of arthritis, including osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, and more!⁣
katethealmostgreat⁣
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#ArthritisAwareness #RheumatoidArthritis #Fibromyalgia #SjogrensSyndrome #Arthritis
SHARING YOUR HEALTH EXPERIENCES PUBLICLY⁣⁣⁣ ⁣ I sh SHARING YOUR HEALTH EXPERIENCES PUBLICLY⁣⁣⁣
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I share my personal health experiences online, which I find it somewhat easy to do because I've been talking publicly - albeit to a smaller audience - since my health problems started in 2001. ⁣⁣⁣
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If you share something online, you need to be prepared for people to ask questions or argue with you. Should they? No. Will that stop them? Also do. ⁣
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That's one of the reasons that talking online about what can be trauma is not easy or for everyone. That's why it's important to practice self-care and to consciously think about what you want to share online before you do it. ⁣⁣⁣
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For example, I generally only talk publicly about a health situation once it has passed, especially if it's an emergency. I also make sure that I'm in a good place mentally before I talk about it. That way, I don't share things I'll regret sharing publicly later. It also helps me be less anxious about sharing these details.⁣⁣⁣
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And I don't share everything! There's lot of stuff that I haven't talked about not only online but with people in real life. It might seem like I share everything I've experienced, but I don't. ⁣
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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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IDs: Kate works on a laptop offscreen. She's a redheaded white woman wearing a beige-and-navy striped sweater, silver Claddagh necklace, and pink glasses.⁣
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#ChronicallyIll #RheumatoidArthritis #ChronicPain #Endometriosis #SjogrensSyndrome
Week 18 of 2026 Weekly 1️⃣ Cross-stitch and IVIG Week 18 of 2026 Weekly 

1️⃣ Cross-stitch and IVIG 
2️⃣ Another trip to the foot doctor. We’re officially in Try To Avoid My 6th Foot Surgery mode 🤞🏻 
3️⃣ At least there were lilacs?

⬛⁣⁣⁣⁣⁣⁣

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⁣⁣.

⬛ 

IDs: 
1️⃣ Looking down at Kate’s lap. Tubes are coming out of her shirt. She’s working on a cross stitch.
2️⃣ Kate takes a selfie in a doctor’s office. She’s wearing a lilac mask.
3️⃣ A lilac bush

#IVIG #CrossStitching #ChronicIllness #ChronicallyIll #InvisibleIllness
FAQ: Have I Tried Yoga for My Pain? This is a se FAQ: Have I Tried Yoga for My Pain? 

This is a series where I answer questions I frequently get about my rheumatoid arthritis. I am not a medical professional and this is not medical advice - just saying the truth about my body in particular. 

Video: Kate speaks to camera. There are captions. A black text box reads “FAQ: Have I Tried Yoga for My Pain?” 

#RheumatoidArthritis #AutoimmuneArthritis #Arthritis #ArthritisAwarenessMonth
May is Arthritis Awareness Month, which is the per May is Arthritis Awareness Month, which is the perfect time to remind people of these facts. Here's today's fact.⁣
⁣
Like, comment, and share to spread awareness 💖⁣
⁣
⬛⁣
⁣
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⁣⁣.⁣
⁣
⬛⁣
⁣
ID: Fact or Fiction? Let's Check! ⁣
Fiction⁣
Arthritis only affects people as they age.⁣
Fact⁣
Arthritis can affect anyone at any age, including kids as young as 3.⁣
katethealmostgreat⁣
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#ArthritisAwareness #Arthritis #RheumatoidDisease #RheumatoidArthritis #ArthritisAwarenessMonth
I’ve been on IVIG since September. So what does su I’ve been on IVIG since September. So what does success look like? ⁣
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*This is all just for me and my case!*⁣
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1️⃣ I haven't gotten sick at all since I started, not even a cold. ⁣
2️⃣ My lungs are clear of any ground glass opacities, which was what pushed us over to finally doing IVIG regularly. ⁣
3️⃣ We feel better about saying that I don't have any infections. Because symptoms are often signs of the body fighting an infection, we couldn't always trust that I wasn't sick because I didn't have symptoms. ⁣
4️⃣ Because of all of this, we're increasing my next Rituxan dose! This will mean better RA symptoms and hopefully no new illnesses for a few years.⁣
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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: A bunch of IVIG supplies, including a pump. ⁣
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#ChronicallyIll #ChronicIllness #ChronicPain #AutoimmuneDisease #Autoimmune
Week 17 of 2026 Weekly 1️⃣ Making some real progr Week 17 of 2026 Weekly

1️⃣ Making some real progress with this cross stitch
2️⃣ Walking casts have multiple uses, including holding down your mat! (Don’t worry - I only did broken-foot-compatible things) 

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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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IDs:
1️⃣ An in-progress cross stitch. You can see that Kate stitched 2 bears.
3️⃣ A walking cast lies on a black yoga mat 

#CrossStitching #CrossStitcher #RheumatoidArthritis #Osteoporosis #LoopsAndThreads
Can we talk about fatigue for a sec? ⁣⁣⁣ ⁣ Fatigue Can we talk about fatigue for a sec? ⁣⁣⁣
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Fatigue is so much more than being tired. It's sleeping 10 hours at night and then struggling to stay awake during the day. It's trouble focusing because, even though you just had 3 cups of coffee, you're thinking about sleep. It's needing to factor rest in during the day because you have plans at night. ⁣⁣⁣
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It's a lot. ⁣⁣⁣⁣
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It's no secret that I have multiple chronic illnesses. But did you know that all of them - all 11+ of them - have fatigue as a symptom? Sometimes the fatigue is worse than the pain and, uh, I live with a lot of pain.⁣⁣
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This picture was taken when I was super anemic and waiting for 4 iron infusions. Now, months later, I can see it. And I also don't know how I got through the months of that anemia. ⁣
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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. She's a redheaded white woman wearing a gray sweater and pink glasses.⁣
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#ChronicallyIll #RheumatoidArthritis #Fibromyalgia #Endometriosis #POTS
Week 16 of 2026 This week had EVERYTHING 1️⃣ Cr Week 16 of 2026 

This week had EVERYTHING

1️⃣ Cross-stitch during virtual mass 
2️⃣ Tuesday featured a 90-minute meeting during work and then an hour advocacy work call after my day job (both were good!)
3️⃣ Wednesday started at my foot doctor’s office and I left in a walking boot. Hopefully these 3 fractured bones will heal correctly this time 🤞🏻
4️⃣ Thursday started back at MGH for my annual neurology appointment + foot CT scan
5️⃣ Then I went up to Maine … 
6️⃣ to celebrate my grandma’s 85th birthday! 

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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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IDs: 
1️⃣ In the foreground is an in-progress cross-stitch piece. The background shows an open laptop streaming Catholic mass.
2️⃣ Kate takes a selfie. She’s a white woman with auburn hair and green glasses.
3️⃣ Kate takes a selfie in a doctor’s office. 
4️⃣ Kate takes a selfie in a car.
5️⃣ Kate takes a selfie snuggling with a golden retriever.
6️⃣ Kate and her cousins stand with their grandmother in front of a sign saying "Happy Birthday." 

#CrossStitch #ChronicPain #ChronicallyIll #InvisibleIllness
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