• Skip to main content
  • Skip to primary sidebar
  • Skip to footer

Kate the (Almost) Great

Chronic illness blog

  • Home
  • Start Here
    • About
    • As Seen On
    • Tags & Topics
    • Popular Posts
  • Blogging Resources
  • Freebie
  • Shop the Blog
    • Products for the Chronically Ill
  • Work with Me
    • Ads and Sponsoring
  • Follow
  • Holiday
    • Gift Guides

in Health · October 10, 2018

How To Become an Advocate for Patients

Hello, friends! Apologies for the unexpected absence; as I said on social media, I dealt with a hellish stomach virus that I’m slowly but surely getting over. It took me out of commission from Thursday to about Monday, and I’m still recovering. But I’m back, and luckily had already mostly written this post before hand!

If you’re wondering how to become an advocate for patients, I really hope that this helps your journey. You don’t have to be a patient to be an advocate! You can advocate on behalf of someone else. Just remember that people who have a condition/illness/etc. speak with more authority on that condition that you do on that condition.

Whether you are a patient or you care about one, you might be interested in advocacy. In this post, patient advocate and blogger Kate the (Almost) Great shares her advocacy background and her tips for how to become an advocate for patients.

My Advocacy Background

I started getting into advocacy in 2011, a little over a year after I was diagnosed with autoimmune arthritis. I started with my circle of family and friends and shared my story and some statistics about arthritis around World Arthritis Day. I kept going like that until I started this blog in 2013, at which point I started to share my story beyond my circle and with the Internet. 

May of 2013 was also when I became aware of the Arthritis National Research Foundation. I purchased their Action Pack, which includes a t-shirt, stickers, and more. I wrote about some of the things I experienced, like someone not believing that my accessible parking placard was actually mine. All of this picked up a lot when I quit my teaching job due to my health. In the year between when I quit and when I started grad school, I mainly worked on getting into grad school, my health, and this blog. This is when I started writing a lot more dedicated health posts. This blog was (and has continued to be) my main source of advocacy.

Through my blog posts, I have actually been able to go to the Arthritis Foundation’s Advocacy Summit 3 times! This is an amazing opportunity, as you meet with the offices of your senators and representatives, and the Arthritis Foundation trains you on all of that beforehand. Through getting more involved in their advocacy program, I’ve learned so much about advocacy. This had led me to be more confident contacting my senators and representative; I’ve contacted them so much that my congressman’s chief of staff recognizes me and my name.

I have also raised thousands of dollars for the Arthritis Foundation through their Walk To Cure Arthritis. I’ve led my own team and joined my friend’s team. This is a way to raise awareness but to also concretely affect the future. In the scheme of things, it might not be much, but everything helps.

I also share a lot about my health and illnesses (not just RA!) on my social media. In my Instagram stories and Twitter, I share a lot of insights into the ways that my health impacts my life. I’m trying to do this more on my Instagram itself (especially because my followers have asked for it), but at the very least I almost always share when I get an infusion.

I share all of this basically to tell you guys that I have experience with this. Arthritis is my main advocacy focus, but I try to also work on some of my other illnesses, especially those that I’ve developed over the last few years. I’ve been doing it more seriously for 4 years, and I hope that my tips help you dip your toes in it. I’m also thinking about doing a post all about creating a blog for health/advocacy, so let me know in the comments if you’re interested in that!

Here’s my guide for how to get involved in the political system if you never have before.

How to become an advocate for patients, patient advocacy, how to be an advocate, politics, chronic illness, chronic pain

How To Become an Advocate for Patients

Education – The most important part of being an advocate is knowing what you’re talking about. Most people are more likely to listen and understand if you have facts and you have the answers to your questions. For example, when I start explaining elements of arthritis to people, they often have questions. I want to make sure that I understand what I’m talking about so I can answer them. They might about my opinion on certain laws, what the statistics are of arthritis patients, or even what they can do to help.  In all of these cases, the self-education I’ve done allows me to answer their questions, or for me to say, “I actually don’t know the answer to that, but I’ll look it up and get back to you.”

Get involved with organizations – If you’re looking to be an advocate for a specific condition or illness, look into the organizations that support them, either in your country or area. These organizations can provide you with information, specific ways to support them or the people they serve, and ways to get involved. For example, as I mentioned, I’m involved with the Arthritis Foundation and the Arthritis National Research Foundation. They both support people with arthritis, but they do it in different ways. ANRF focuses entirely on funding research, although they also offer ways to support arthritis patients and they spread information on arthritis. AF, on the other hand, advocates for arthritis patients in Washington as well as state governments, organizes large events to raise money for arthritis research, has a large amount of information on arthritis to educate people, offers ways to get involved, and more. By getting involved in both organizations, I’m able to help other patients as best I can. But also, make sure to educate yourself so you don’t worth with an organization that does shady things.

Create a platform for yourself – By creating a platform for your voice, your message can reach so many people. My platform is this blog as well as my social media accounts. By growing this blog – and especially, in my case, writing about topics other than health – I’m able to reach so many more people than if I was an average person on social media. That’s not to say that you won’t be able to reach people if you have a small number of followers, if you only blog about health concerns, or if you don’t have public social media accounts. You will simply be able to reach more people by growing your platform.

Build relationships – You want to build relationships with other advocates, organizations, and more. These relationships can serve a variety of purposes. 1) Relationships with other advocates can help support you in your own advocacy. You can learn from each other, support each other in your endeavors, introduce each other to other connections, and provide emotional support for each other during difficult times. 2) As mentioned above, organizations can be super helpful for advocacy. Building relationships with these organizations can provide your advocacy with some guidance, more opportunities, and meeting more people.

Try not to compare yourself to others – This is easier said than done, but it’s important. No one else can do exactly what you’re doing. Even if they’re advocating for the same condition, running similar online platforms, or working with the same organizations, no one else is you. So there’s no point in comparing yourself to others! Get inspired by others, learn from others, build relationships with others, but don’t compare yourself to them.

Identify your goals for your advocacy – How will you know if you’re doing a “good” job? Like with most aspects of life, you’ll never know if you’re succeeding if you don’t have a goal that you’re looking for. I suggest setting a goal for a period of time, such as a week or a month if you have a busy season, or a year if you don’t have specific things coming up in your advocacy. Maybe your goal is that you’ll email or call your senators every month about a certain issue, or that you want to get x law passed in your state. Setting goals helps you figure out if you’re doing a “good” job and gives your advocacy more direction.

Prepare yourself to get out of your comfort zone – If you’re an introvert like me, advocacy can involve getting you out of your comfort zone! You’ll need to accept that some elements of advocacy can make you uncomfortable. For a lot of things, there are certain alternatives, such as emailing your senator instead of calling. And you can ease yourself into advocacy! You don’t need to go from zero to one hundred in the span of a month or a year. But I haven’t met anyone yet who hasn’t gotten out of their comfort zone even once over the course of their advocacy.

Don’t lose hope – The thing about advocacy is that it isn’t easy. There will be a lot of people who don’t agree with you or who have other things that take up your time. Sometimes it will feel like you’re not doing anything or that your work doesn’t matter. So it’s important to keep your chin up when it comes to bad or negative days or weeks – and you’re allowed to have them! The important thing is that you keep going and you keep advocating for your cause. Your work does matter to the people you’re advocating for, even if they don’t know that you exist.

Practice self-care – And it’s important to take care of yourself first and foremost. You won’t be any good to patients if you’re doing poorly physically and mentally, and that’s especially true if you’re also a patient. Take care of yourself. Self-care can look like doing things that you enjoy, but it can also look like taking a break when you need one or not participating in an event if it will mean pulling yourself in too many different directions. It’s okay to take a break, and it’s so important when you’re doing advocacy.

10 Simple Self-Care Methods That Will Improve Your Life

What advice do you have for someone interested in becoming an advocate for patients?

Like this post? Check out:

We Need To Talk about Ableism, Is Chronic Illness a Disability?, Chronically Ill Tips: Preparing for Medical Appointments, Why You Should Try Meditation

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.

Share this with your family and friends:

  • Click to share on X (Opens in new window) X
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on Pinterest (Opens in new window) Pinterest
  • Click to email a link to a friend (Opens in new window) Email
  • Click to share on LinkedIn (Opens in new window) LinkedIn
  • Click to print (Opens in new window) Print
  • Click to share on Tumblr (Opens in new window) Tumblr

Related

Previous Post: « What I Did To Drive Traffic to My Blog in September
Next Post: 2018 Recent Reads: July-September »

Reader Interactions

Trackbacks

  1. Kate the (Almost) Great | Boston Lifestyle Blog - About the Americans with Disabilities Act - Kate the (Almost) Great | Boston Lifestyle Blog says:
    February 12, 2019 at 7:01 am

    […] How To Become an Advocate for Patients, Caring for Rheumatoid Arthritis Patients, How Is Chronic Pain Different from Acute Pain, Answering Questions about Being Chronically Ill […]

    Loading...
    Reply
  2. Chronically Ill Tips: What To Do When a Doctor Isn't Listening to You says:
    October 15, 2022 at 3:48 pm

    […] How To Become an Advocate for Patients, Building Self-Confidence When Chronically Ill, Caring for Rheumatoid Arthritis Patients, […]

    Loading...
    Reply
  3. Rheumatoid Arthritis Guide A-Z: Part Three says:
    October 1, 2024 at 7:01 am

    […] How To Become an Advocate for Patients […]

    Loading...
    Reply

Leave a ReplyCancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Primary Sidebar

Kate the (Almost) Great® is a chronic illness lifestyle blog. It is a resource for chronic illness patients and their loved ones.

  • Bluesky
  • Email
  • Facebook
  • Instagram
  • Pinterest
  • Twitter

Categories

Health
Lifestyle
Writing & Blogging

Pages To Start With

  • About Kate the (Almost) Great®: Meet the Health Blogger
  • As Seen On
  • Follow
  • Health Blog Resources I Actually Use + Recommend
  • Newsletter
  • Popular Posts
  • Privacy Policy & Disclaimer Policy
  • Products for the Chronically Ill: My Recommendations
  • Shop
  • Start Here
  • Tags & Topics
  • Work with Me

Search

As an Amazon Associate I earn from qualifying purchases.

This blog uses affiliate links. Thank you for supporting Kate the (Almost) Great!

Sign Up for the Newsletter

Please wait...

Thank you for sign up!


Bluehost.com Web Hosting $3.95

Health Union Patient Leader Certification

Support KTAG

If you like what I do, please support me on Ko-fi.




Footer

Sign Up for FREE Instagram Challenge

Get 25 FREE Instagram prompts for chronic health creators!

You can unsubscribe anytime. For more details, review our Privacy Policy.

Thank you!

You have successfully joined our subscriber list.

Get your FREE Instagram challenge here 

and 

For just $5 get your copy of my ebook Take Your Blog (And Income!) to the Next Level with code "greatest".

.

Kate the (Almost) Great

Chronic health lifestyle blog

Lets Go!
  • Facebook
  • Instagram
  • Pinterest
  • Twitter
Learning about my body: Wow, it’s incredible how Learning about my body: Wow, it’s incredible how much we know about the human body!⁣
⁣
Also learning about my body: Do we know anything at all about the human body?⁣
⁣
◾ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
I’m Kate, a chronic illness patient and advocate. Follow me for more content for chronic illness patients and their loved ones!⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
ID: Screenshots of a thread post written by katethealmostgreat. The text reads what's about the first black box.⁣
⁣
#AlmostGreatHealth #rheumatoidarthritis #arthritis #spoonielife #healthblogger #autoimmune #autoimmunedisease #chronicallyill #healthblog #dysautonomia #fibro #fibromyalgia #endo #chronicallyill #disability #disabled #invisibleillness #DisabledAndCute #spoonielife #healthblogger
Live for yourself 💖 _______ Video: a series Live for yourself 💖 

_______ 

Video: a series of videos featuring Kate. This includes her working on a laptop, drinking, showing off her dress, and opening her kindle.
Week 20 of #2025Weekly ⁣ ⁣ I did very little l Week 20 of #2025Weekly ⁣
⁣
I did very little last week! So little I forgot to schedule this post. I the week at my parents’ while recovering from my infusion. Thankfully I had a fluffy nurse to help! And then I spent the rest of the week catching up from what I missed while dealing with my infusion. ⁣
⁣
▪ ⁣
⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
▪ ⁣
⁣
ID: a golden retriever walks towards the camera on a red rug. There’s a dog toy in his mouth and another one on the rug. ⁣
⁣
 #AlmostGreatHealth #AlmostGreatLife #ChronicallyIll #SpoonieLife #RheumatoidArthritis #RheumatoidDisease #Autoimmune #ButYouDontLookSick #AutoimmuneDisease #SpoonieLife #InvisibleIllness #RetrieversOfInstagram
I don’t think health problems are “deserved” I don’t think health problems are “deserved” or a punishment but I do think if I didn’t have mine I would have the time and energy to take over the world, so … 

_______ 

Video: Kate runs a hand through her hair. White text reads “How I feel knowing that God gave me chronic health issues because I would be too powerful without them”. The audio says “cause I’m too messy and I’m too fuckin clean they told me to get a job”. Kate is a redheaded white woman wearing a green dress with white flowers on it, a black shawl, a silver Celtic knot necklace, and round tortoiseshell glasses 

#AlmostGreatLife #SpoonieHumor #InvisiblyIll
The most common question I get about sharing my ex The most common question I get about sharing my experience with chronic illness is "How do you deal with it?" These 3 quotes are sources of inspiration and indicative of how I do it. ⁣
⁣
1. "Guard your time fiercely. Be generous with it, but be intentional about it." - Davd Duchemin⁣
I am SO intentional with my time. Even when I (rarely) do spur-of-the-moment fun things, I'm doing mental calculations of how to make it happen. ⁣
⁣
2. "Find out who you are and do it on purpose." - Dolly Parton⁣
That's what my blog and advocacy work is. I figured out who I am: someone who helps other patients, who shares her story, who tries to change the world. And I'm doing it on purpose. ⁣
⁣
3. "For God has not given us a spirit of fear and timidity, but power, love, and self-discipline." - 2 Timothy 1:7 ⁣
I will be afraid some times (we all will) but my spirit is not one of fear or timidity. My spirt of power, love, and self-discipline enables me to keep fighting for myself and others. ⁣
⁣
◾ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
I’m Kate, a chronic illness patient and advocate. Follow me for more content for chronic illness patients and their loved ones!⁣
⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣◾ ⁣
⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ID: Screenshots of Bluesky posts written by Kate Mitchell | Kate the (Almost) Great with the username katethealmostgreat.bsky.social. ⁣⁣The background is dark teal. The text on each post is one of the quotes mentioned above.
Click the link in my bio to get my medical appoint Click the link in my bio to get my medical appointment freebie! 

_______ 

Video: a series of videos. The first 2 are from doctor’s offices. The most important one is the 3rd which is a screen share of the document. It shows space for medical history, current medical problems, medications, family history, and more. There are captions. 

#AlmostGreatHealth #ChronicIllness #ChronicPain #RheumatoidArthritis #RheumatoidDisease #Fibro #Endometriosis #Endo #POTS #Dysautonomia #SjogrensSyndrome #Sjogrens #Fibromyalgia
Here are just some of the things that make me happ Here are just some of the things that make me happy. Share yours in the comments!⁣
⁣
▪ Being home in Maine⁣
▪ Spending time with family ... especially when we get to dress up!⁣
▪ Baking. It's really nice to make a finished product that then gets to be enjoyed! (Not to mention that when I cook or bake I can make meals and donuts and cookies that I can eat)⁣
▪ Medieval stuff but ESPECIALLY weird medieval stuff⁣
⁣
Obviously I know that I'm more than my illnesses - just because I don't have a ton of followers doesn't mean that this isn't a curated account with a purpose - but this is who I am outside of the Internet.⁣
⁣
◾⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
◾⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
IDs: ⁣
▪ A dock over a lake ⁣
▪ Kate, Kathy, Tricia, David, and Emily stand in front of a stone wall.⁣
▪ Looking down at a counter where Kate is mixing ingredients and other ingredients are ready to be used.⁣⁣
▪ Kate holds the book Weird Medieval Guys⁣
⁣
#AlmostGreatLife #MaineLife #207 #MaineTheWay #MaineThing #BakersOfInstagram #GlutenFreeBaking #GlutenFreeLife #SpoonieLife #InvisibleIllness
Week 19 of #2025Weekly ⁣ ⁣ 1️⃣ CT scan rea Week 19 of #2025Weekly ⁣
⁣
1️⃣ CT scan ready ⁣
2️⃣ Hours after having a panic attack because, among other things, I need another root canal. ⁣
3️⃣ Infusion time, thank God⁣
⁣
◾⁣⁣
⁣⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣⁣
◾⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣⁣
IDs: ⁣⁣
1️⃣ Kate takes a mirror selfie. She's a brunette white woman wearing black leggings, a black t-shirt, a jean jacket, a black cross-body bag, aviator sunglasses, and an orange mask. ⁣
2️⃣ Kate takes a selfie. She looks unhappy. She's wearing a yellow t-shirt and round tortoiseshell glasses.⁣
3️⃣ Kate takes a selfie in an infusion chair. She's wearing a blue t-shirt, white blanket, round tortoiseshell glasses, and orange mask. ⁣
⁣
#AlmostGreatHealth #AlmostGreatLife #ChronicallyIll #InvisibleIllness #SpoonieLife #RheumatoidArthritis #RheumatoidDisease #Autoimmune #ButYouDontLookSick #AutoimmuneDisease #SpoonieLife #DisabledAndCute
Some things I've done for this so far:⁣ ▪ Gett Some things I've done for this so far:⁣
▪ Getting professional haircuts on a regular basis⁣
▪ Got a Kindle and therefore reading more⁣
▪ Making bread regularly, even though I'm bad at it ⁣
▪ Doing my best to keep houseplants alive⁣
▪ Regularly looking for more recipes to try making and not relying on the ones I already have⁣
⁣
◾ ⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣
⁣
I’m Kate, a chronic illness patient and advocate. Follow me for more content for chronic illness patients and their loved ones!⁣
⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣◾ ⁣
⁣
⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣⁣ID: Screenshots of thread posts written by Kate Mitchell | Kate the (Almost) Great with the username katethealmostgreat. ⁣⁣The background is dark teal. All text is here, with one paragraph per image:⁣
"I realized recently that, big picture, this is the best my health has been since I got sick. When I got my infection in 2018 that impacted my whole body until 2023, I wasn’t diagnosed with one of my illnesses and 3 of my diagnosed ones weren’t controlled to the level they are now.⁣
So this year my quasi-resolution is being nice to myself and focusing more on thriving than existing. Because I can, for the first time maybe ever, thinking about thriving *and* existing."⁣
⁣
#AlmostGreatLife #AlmostGreatHealth #ChronicallyIll #SpoonieLife #ChronicallyAwesome #InvisibleIllness #ButYouDontLookSick #LivingWithIntention #Disability #Disabled #Spoonie
Follow on Instagram

Copyright © 2025 · Kate the (Almost) Great · Design by Studio Mommy

%d