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in Health &middot May 9, 2018

Attending the HealtheVoices 2018 Conference

As anyone who has been blogging since 2014 or earlier will tell you, blogging has changed a lot in the last couple of years. When I first started in 2013, posts across the board were a lot less polished and personal. One thing that we did then that doesn’t happen often now? Recaps of your weekend! So today I’m throwing it back to 2013 and recapping my time at the HealtheVoices conference at the end of April.

Disclosure: Jannsen paid for my travel and accommodations, but all opinions are my own, per usual.

Have you heard about the HealtheVoices conference? I'm talking about my experience attending in 2018.

What is HealtheVoices? HealtheVoices (pronounced “healthy voices” is a conference for patient advocates. This includes people who have a wide variety of conditions – both mental and physical – as well as those who advocate for them. What I really loved about it was that there was such a wide variety of conditions represented. In fact, there were 40. FORTY! This is so awesome. It gave me the opportunity to connect with people who have some of the same experiences as me (both in terms of advocacy and living with chronic illnesses) as well as those who don’t. I learned so much over this weekend. The conference is put on by Janssen Pharmaceuticals, a part of the Johnson & Johnson company, and what’s so amazing is that they paid for everyone’s travel and accommodations. All 120+ of us.

What happened? It was a very full two-and-a-half days! We had sessions almost constantly, although there were breaks built in. I flew in on Thursday afternoon and we started right off the bat on Friday. There was a breakfast, which was great because I got to start meeting people almost immediately. After that, there was a group session welcoming us to the conference before we got down to business. One really cool thing about this morning was we were all assigned to our different tables, so it forced us to meet new people. Additionally, we did an icebreaker-type of activity together, so we got to know each other quickly. After lunch, there was another large group session titled, “The Power of Resilience: The Strategies for Thriving in the Challenging Situations We Face.” We heard from people who have been through really tough and difficult situations, like my friend Kenzie, who was in the ICU and in a coma earlier this year. The rest of the day was a variety of break time, an exhibitor fair featuring the various sponsors of the conference, and networking before dinner. Once again, we were assigned tables.

Saturday was a bit different, as most of the sessions were split, meaning we had at least two options for each session. After a group session where we learned about utilizing Twitter for advocacy (a talk done by someone from Twitter!), we started having breakout sessions. The first options were “From Dreams to Screens: Video Filming and Editing Essentials” and “Striking a Balance While Advocating Across Multiple Conditions.” As some of you might remember, I once upon a time tried to have a YouTube channel, but I honestly didn’t like editing, so I stopped, and the first option was not right for me. But one thing I’ve been struggling with in recent years is how to advocate for a variety of conditions. As you guys know, rheumatoid arthritis is my main issue, so RA and arthritis in general is the thing that I advocate for the most. But I have multiple conditions, and I don’t really know how to go about advocating for more in ways that are not just, “POTS is x and it affects me in this way,” for example. I found this super interesting, and I’m so glad that I went!

The next session options on Saturday were “The ABCs of Storytelling” and “Express Yourself: Using Visual Tools to Engage Your Community.” As you’ve probably figured out, I prefer words to images, so I went to the first one. While I initially wasn’t sure how much I could learn from this session because I’ve been blogging for 5 years and writing for 20, I actually learned a lot. After lunch, we had another group session, which was “Developing a Content Strategy: Planning Your Year on YouTube,” which was led by people from YouTube(!). I didn’t go to this one because my ankle was being rude, but I heard really good things about it.

Attending the HealtheVoices 2018 Conference

After that, we had more breakout sessions. The first options were “Working with Publishers To Create Accurate and Empowering Content” and “Podcast Project: You Can Do It!” As you probably figured out, a lot of this weekend was spent talking about different ways to produce content that advocates for your focus. I really like how these two options went into two very different but effective strategies for this. On another side of advocacy, the next session options were “Bravely Advocating in Our Diverse World” and “The Unwritten Rules of Business Etiquette.” As a white woman, I didn’t feel that the first option was for me, so I went to the second. That was cool because we went beyond the rules of don’t swear and dress nicely.

The last session of Saturday was actually called “Share Personal Experience and Advice for Living with Chronic Illness,” which I think was really cool because, as I mentioned, there are some similarities when comes to living with chronic illnesses regardless of your illness, but there are also so many differences depending on your condition. It was great to hear about other people’s experiences. And after this, we did the group photo before a break and dinner, followed by the HealtheVoices Open Mic Night. Sadly, I did not attend this as my ankle was extremely angry with me, but I hear that it was awesome.

Then, sadly, it was the last day. After breakfast, we learned about the Impact Fund, which is a grant for [PURPOSE]. We also got to hear from people who received this in the past and learn about their projects. After this, we had another group presentation called “Finding Strength & Unity in Our Differences,” which was exactly what it sounds like.

But on a completely different end, the last session before the closing was a performance piece from a patient about suicide and healing through connections. This was incredibly moving, and many people were in tears by the end.

Attending the HealtheVoices 2018 Conference

Want to learn what we learned? You’re in luck! A lot of it was streamed online. You can check it out on the HealtheVoices website. Additionally, I live tweeted a about half of the conference, so here are some of the threads.

Onto the next session – all about podcasting! #HealtheVoices18 #sponsored

— Kate Mitchell (@kmitchellauthor) April 29, 2018

First session is learning about the Impact Fund, which is a grant by @JanssenUS for the projects of online advocates (this is a very simplified explanation FYI) #HealtheVoices18

— Kate Mitchell (@kmitchellauthor) April 29, 2018

Time for a session on the unwritten rules of business etiquette with @wegohealth! #HealthEVoices18 #sponsored

— Kate Mitchell (@kmitchellauthor) April 28, 2018

Next session: ABCs of Storytelling #HealtheVoices18 #sponsored

— Kate Mitchell (@kmitchellauthor) April 28, 2018

Time to learn about advocating across multiple medical conditions! #HealtheVoices18 #sponsored

— Kate Mitchell (@kmitchellauthor) April 28, 2018

Here are some of the awesome things about the conference:

Both Saturday and Sunday morning, there was a yoga session. I didn’t attend because my ankle isn’t exactly yoga-friendly at the moment, but I love that they had it.

There as a resting room, aka a room designed for us to rest in. There was plenty of couches and heating pads abounded.

The conference and the hotel went above and beyond for people who struggled physically, aka me. They told us to take any rest time we needed. The event staff went out and got a sharps container for me because I had to give myself blood thinner injections in order to travel. On Sunday, someone went up and got my suitcase for me because I can’t exactly carry it while I’m on crutches. I could go on and on.

The talks were led by cool people who work for cool companies, like Twitter, YouTube, Wego Health, Wisdo, and more.

I could go on and on. Basically, I loved it and I can’t recommend HealtheVoices enough.

Have you ever been to a conference like this?

Like this post? Check out:

 My Rheumatoid Arthritis Treatment + How I Got There, Hacks for Living with Chronic Conditions, 5 Items Every Immunosuppressed Person Needs, A Guide to Chronic Illness for Those Who Don’t Have One

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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  1. Kate the (Almost) Great | Boston Lifestyle Blog - Helping Someone with RA | Kate the (Almost) Great, Boston Lifestyle Blog says:
    May 14, 2018 at 8:00 am

    […] if we’ve been through a rough time recently and weren’t able to do it. For example, I recently attended the HealtheVoices conference, and while there I rented a scooter because I’m still on crutches. This meant that I was able […]

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  2. HealtheVoices 2019 - Kate the (Almost) Great says:
    January 23, 2022 at 2:55 pm

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  3. The Emotional Side to My Tarsal Coalition Surgery Recovery says:
    February 4, 2024 at 3:43 pm

    […] back to blogging and going to HealtheVoices – But I was determined to get back to my normal life, so at around week 3, I started blogging […]

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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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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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#AutoimmuneDisease #RheumatoidArthritis #PsoriaticArthritis #AnkylosingSpondylitis #JuvenileArthritis
Weekj 26 of 2026 Weekly Scenes of a summer week Weekj 26 of 2026 Weekly 

Scenes of a summer week in Maine! So glad I work from home, which means I can work from my real home (Maine, if that wasn’t clear)

1️⃣ Lots of Harley time
2️⃣ Working from home means saving my PTO for fun things!
3️⃣ Lots of duck families (📸 my dad)
4️⃣ What a lot of my days look like - Harley and my current project (needlepoint). And, yes, I’m still in a cast.
5️⃣ Learned how to play Mahjong, which my parents love
6️⃣ Lake views on the 4th

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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 Harley the golden retriever on a deck as seen through some plants
2️⃣ Kate takes a selfie
3️⃣ A duck with little ducklings following on a lake
4️⃣ Harley coming up to Kate. Her legs are out on an ottoman, 1 foot in a walking cast, and an in-progress needlepoint project
5️⃣ Looking down at a Mahjong table with the game set up
6️⃣ A kayak on the shore of a lake 

#MaineTheWay #MaineSummer #Needlepoint #MaineLife
Living with chronic pain is really hard. You’re wi Living with chronic pain is really hard. You’re winning every day you’re still here.⁣
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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: The background image is a lake at sunset. Text reads what's above the first square and also "katethealmostgreat".⁣
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#ChronicIllness #ChronicPain #RheumatoidArthritis #Fibromyalgia #Endometriosis
I've been spending a fair amount of time at my foo I've been spending a fair amount of time at my foot surgeon's office this year, and boy has it been messing with my head. ⁣
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I spent a lot of time from 2001-2010 dealing with my left foot. Long story short, it took until this foot surgeon saw me in 2010 after fixing this foot for me to be diagnosed with rheumatoid arthritis. But I spent those 9 years going from doctor to doctor, having surgery after surgery, trying to figure out what was causing my pain and to fix it. ⁣
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Was it the tarsal coalition? Did I have another chronic health issue? Etc. ⁣
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I spent from age 10 to 19 unsure what exactly was wrong with me and in huge amounts of pain. We thought we figured it out, and then something else happened. ⁣
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We know exactly what is wrong with this foot this time around: in 2024, I got 3 stress fractures, and no one put me in a boot. They almost fully healed before breaking in 2025, and then the same thing happened in 2026. ⁣
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This is a different part of the foot than I used to deal with, but any problems with my feet and especially my left foot messes with me. While this doctor eventually fixed the problems and even got me diagnosed with RA, every time I go back to his office, I have to fight not to become 17 again. ⁣
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PTSD is a bitch.⁣
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(PS - if you want to know why I'm going back to this guy when it messes with me, it's because I don't trust anyone else to fix my foot.)⁣
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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 in a doctor's office. ⁣
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#PTSDAwareness #ChronicallyIll #TarsalCoalition #RheumatoidArthritis #Osteoporosis
Week 25 of #2026Weekly Happy to be in Maine for Week 25 of #2026Weekly 

Happy to be in Maine for a few weeks! I didn’t get up to a lot, so another week of very few pictures

1️⃣ IVIG 
2️⃣ Lots of beautiful birds have been coming to my mom’s bird feeder!

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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 Looking at Kate’s lap. Tubes are coming out from under her shirt and there’s a Kindle
2️⃣ Birds arriving at a bird feeder as seen through a window

#ChronicallyIll #InvisibleIllness #ChronicPain #IVIG
What do you have to do every day for your chronic What do you have to do every day for your chronic illnesses? ⁣
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For context, I have rheumatoid arthritis, fibromyalgia, endometriosis, POTS, heart disease, osteoporosis, and 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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ID: ⁣
Things I Do Every Day for My Chronic Illnesses⁣
Take pills at least 4 times a day⁣
Don’t eat gluten, dairy, corn, soy, or eggs⁣
Sleep 7+ hours a night⁣
Consume 80-100 grams of protein, 120 mg of calcium, 5-10 grams of sodium⁣
Wear a mask whenever I leave the house⁣
Do pilates 4+ days a week⁣
Work from home⁣
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#ChronicallyIll #InvisibleIllness #RheumatoidArthritis #Fibromyalgia
Filmed this back in April (hence the sweater) but Filmed this back in April (hence the sweater) but it applies to whenever I have appointments! 

Video: Kate talks to the camera while holding a purse. She holds up individual items mentioned in the video before putting them in the bag. There are captions. 

#ChronicallyIll #RheumatoidArthritis #Osteoporosis #ChronicPain
There are a lot of medical advancements that I'm g There are a lot of medical advancements that I'm grateful for, but one of them is the ability to do IVIG at home. ⁣
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I'm on IVIG - or, in my case, subcutaneous immunoglobulin replacement therapy - because I have to kill the better part of my immune system. There are, in fact, some parts of my immune system that don't attack me, which is why we add them back in. This helps reduce my chance of serious infection and also made my rheumatologist feel comfortable enough to increase my Rituxan dose. ⁣
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This is a weekly treatment that I do, but it's so much better that I can do it at home than going into the hospital. It takes around 2.5 hours from taking my pre-meds to tossing my needles into a Sharps container. While it's another thing that I have to do, because I do it at home, I don't have to risk exposure to infections at the hospital or deal with Boston traffic, which would add another hour to the process. ⁣
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I can finish my treatment and then go about my day, which I'm very grateful for.⁣
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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 Kindle on Kate's legs. There are tubes for an infusion coming out of her shirt.⁣
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#IVIG #ChronicallyIll #RheumatoidArthritis #Autoimmune #AutoimmuneDisease
Weeks 23 and 24 of 2026 Weekly! The last two wee Weeks 23 and 24 of 2026 Weekly! 

The last two weeks were prepping for my infusion, having/recovering from my infusion, and getting caught up after. This meant things were very busy but also I don’t have a lot to show for them. 

1️⃣ New glasses! I really like having multiple pairs so I can switch them as I want.
2️⃣ One of my current projects. I got this standing hoop for my birthday and I’m working on an alphabet (uppercase and lower, although I’m still working on the lower) with extra floss.
3️⃣ Infusion time! I got my higher dose so hopefully my symptoms improve a lot in the upcoming weeks🤞🏻

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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 Kate takes a selfie. Her new glasses are thin silver circles
2️⃣ An in-progress cross-stitched alphabet in a special hoop stand that Kate is sitting on.
3️⃣ Kate takes a selfie in an infusion chair.

#ChronicallyIll #RheumatoidArthritis #AutoimmuneDisease #CrossStitcher
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