Are you trying to get more involved in advocacy, or even just get started? Then this post is for you! Here we’re answering questions like, “What is advocacy?”, “What is advocacy work?”, “How do I advocate for support for my condition?”, and more.
As you can tell from the title, I’m focusing on health advocacy in this post, but a lot of these concepts apply to other topics. Just apply these concepts to your interest!
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What Is Advocacy?
What You Need To Know
Let’s start with some basics. Advocacy is “the act or process of supporting a cause or proposal” (x). I know this is really general, but that’s on purpose. It’s not doing a specific laundry list of tasks to support a cause; it’s just supporting the cause.
You can advocate in a variety of ways.
One, you can share information about your cause with people in your life.
Two, you can talk to your elected officials about your cause.
Three, you can share information about your cause with people online.
There has been a thing in recent years where some people try to say that online advocacy isn’t advocacy, and that’s simply not true. In fact, I have a bigger reach online than I do in person. When I share information about a cause I care about with my followers, that is significantly more influential than my work offline.
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Why Should I Advocate?
You have influence, even if you don’t have a big reach. You also have the power of your story and your experiences, which no one else has. Sure, people have similar experiences. But no one else has experienced the exact things you have.
I think another reason why people think they shouldn’t advocate is that there are other people out there doing it, and how could their voice improve things? But if everyone thought “Well, someone else will do it,” no one would do it.
It’s also important to remember that many people who advocate are not professional advocates. Sure, I’m professional in the scheme that this blog is professional, but most advocates are not paid to advocate for their cause by an organization.
But a big reason why many people advocate – myself included – is that it’s what they feel they need to do.
I started advocating for arthritis and chronic illness patients because it made me feel in control and because after I was diagnosed I realized just how little many people know about arthritis.
I didn’t (and still don’t!) feel like it was their fault. We live in information overload, and many people don’t know how much they don’t know. But I did feel like it would be my fault if I didn’t educate people.
It’s one thing to assume that arthritis is only one thing when no one tells you about it. It’s something else to assume that after someone has told you how much that’s not true.
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Advocacy Tips: How To Get Started
Now that I’ve shared what advocacy is and why you should do it, let’s talk about how to do it! I’ve broken this into a few categories, and while I’m addressing this to health advocates, the information provided does apply to many different advocacy topics.
General Tips
Learn about big issues impacting patients for your condition
This is an essential starting point!
While you might already have an idea of what issues impact people with it – after all, you’re living with it – there will also be things that you don’t know. Whether it’s upcoming laws or types of policies insurance companies follow or something else entirely, you should know what is happening in your condition’s sphere.
It also helps you to identify what your priorities are. You might be convinced that one thing is The Most Important Issue with your condition, but that could be because you don’t know about other issues.
For example, while I still believe that finding a cure for arthritis is the most important thing, there’s very little I can directly do about it now. While everything I do is aimed towards that goal, as I’m not a scientist, I can’t do any hands-on work for it. So in the meantime, I educate people about arthritis and I try to convince the federal government to ban hurtful policies like Step Therapy.
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Verify that what you know about your condition is true
This is important for a few reasons.
One, you don’t want to spread misinformation, especially when you’re trying to convince someone that they should take a specific action.
Two, you want to maintain your reputation. When doing advocacy work, your reputation is the most important tool in your toolbox. If someone thinks that you’re untrustworthy or, worse, uneducated about your condition, they won’t take action.
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Legislative Advocacy
Learn about your representatives’ opinions
This is important for a few reasons.
One reason is that you need to know what their opinion is so you can make a plan based on that. How you talk to someone who supports your issue is different than how you talk to someone who doesn’t.
Another reason is that knowing their current opinions helps you decide what steps to take. For example, if one of their pet issues is health care, you can talk about your issue from that perspective, which is different than if one of their pet issues is veterans.
What you talk about and how you talk about it depends on what their current views are.
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Subscribing to their newsletters helps you stay up to date on what they’re doing in office. You might be wondering if you should do this if you don’t like them, and my opinion is that yes, you should.
Not liking or supporting someone doesn’t mean you shouldn’t follow what they’re doing. Honestly, I think it’s more important to subscribe to your representatives’ newsletters if you don’t like them. That way you can stay up to date on what they’re doing, and you can try to change their point of view.
To be clear, though, I’m saying you should subscribe to their official newsletter, which is different from their reelection newsletter. You should know what they’re doing when they’re representing you; you don’t need to get 5 emails a day asking for donations.
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Follow your reps online
Similarly, follow their official in-seat accounts online so you can stay up to date on their actions. If you don’t like them, then don’t follow their election accounts.
Following their accounts is helpful so you can stay aware of what they’re doing as well as so you can easily reach them. No, they’re probably not scrolling Twitter themselves, but if enough people reach out to them about something, their team will pass it along.
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Contact your representatives
So you’ve researched your representatives’ opinions, subscribed to their newsletters, and followed them online. Now what?
Contact them!
One of the great things about being alive in this day and age is there are a variety of ways to contact your representatives and you can pick the one that is best for you. It could be on social media, via email, by calling, or even via mail.
So how do you do it?
Prepare ahead of time. Know what you’re contacting them about, the facts behind it, and why you’re doing it.
When you contact them, say your name, where you live, and what your issue is about. You don’t need to give them your street address, but you should say the town you live in to assert that you are their constituent. You should also initially give a big-picture description of your issue.
For example, I would contact Elizabeth Warren and say, “My name is Kate Mitchell, I live in the Boston area, and I’m calling about Massachusetts residents with arthritis.”
You should then be more specific. Why should they care? What is the connection? Again continuing my Elizabeth Warren example, I would say, “There are over 54 million Americans with arthritis, accounting for 25% of Massachusetts residents. This includes 300,000 kids with arthritis. Arthritis is a complicated set of illnesses and many people dismiss it as just something that happens when people get older.”
(Note: these stats are probably not accurate as of 2024 as I got them from a fact sheet from 2019. I’m using them just for the example here. As mentioned earlier, you need to make sure that you’re sharing accurate and up-to-date information.)
Finally, give them an action to take. As important as it is to share facts and information with your representatives if you are contacting them, you should ask them to do something. Their offices have so much going on that you need to include a specific request. This could be supporting (or not supporting) a specific bill, asking them to consider a certain amount of money for research, or something else.
In this Elizabeth Warren example, I would say, “Please consider support bill SB-??? which will allocate more money for research into this disabling condition.”
If you’re wondering how to be aware of these specific bills, then keep reading 😉
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Advocacy Organizations
Research the lead organizations for your condition
Condition-focused organizations are an incredible place to start your advocacy work. They already have staffs of people who want to improve things for patients, they already have resources to help you be a better advocate, and some of them even have programs to direct organizations.
Take the Arthritis Foundation, for example. They have staff and offices across the country. They are committed to curing arthritis in the long run and changing laws and procedures in the short run. They have biannual fundraisers where supporters can dip their toes into advocacy, and they have a specialized advocacy program. They also have conferences to help kids with JA connect and parents of those kids to connect. They also have a treasure trove of accurate, up-to-date information on the wide number of forms of arthritis.
Basically, they help the big picture of living with arthritis.
On the other hand is the Arthritis National Research Foundation, which is fully focused on curing arthritis. In addition, though, their website also has accurate, up-to-date information on various forms of arthritis, as well as their own fundraising events. But their focus enables them to throw all of their support behind funding scientists.
While the AF looks for cures, helps change laws, connects patients, and more, the ANRF devotes all of its time to research. These two organizations serve incredibly important focuses, and we arthritis patients are lucky to have both of them.
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Follow them online
This is pretty simple and similar to when you follow your representatives.
Want to stay up to date on what the largest organizations for your condition are doing? Follow them online!
This is helpful for a few reasons.
One is that, like I said, it’s another way to stay up to date on what they’re doing.
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Another is that many of them share helpful – and accurate – graphics and information regarding your condition. Not only can you learn more from them, but you can also easily educate the people in your life and who follow you.
These organizations often share graphics with information on them which you can share with your networks. These are easy ways to advocate as these organizations provide reliable information and you’re educating others.
Another reason to follow these organizations is to learn more about your condition. Especially for a condition like arthritis, there is so much to know and learn that it can be hard to keep facts straight. Those graphics aren’t just helpful for educating other people; they’re also helpful for educating yourself.
Another reason why you should follow them is that, while your emails from them might go to your junk folder, that’s less likely to happen with social media. Yes, the all-powerful algorithm can hide posts and accounts from you, but it’s not the same as going to a junk folder. If you go directly to an account, you can get the network to show you that content again.
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Subscribe to their mailing lists
Yes, by the time you finish this post, you’ll be subscribed to a bunch of newsletters!
But it’s important so you can stay aware of what your organizations are doing. Like with elected officials, you don’t have to be thrilled with everything an organization is doing, but you never know when one of them is going to do something game-changing, or is looking for volunteers for a task or skill that you specialize in.
Staying up-to-date is also important for if an organization does something you don’t like. Because, unlike elected officials, if an organization does something you’re unhappy with or you would like to change, you have to engage with them so that they change it. If a representative does something you hate, all you need to do is not vote for them. But if an organization does it, you have to push back to make them change things.
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Participate in their advocacy programs
As I said, some organizations have advocacy programs, which are a great way for you to get involved.
Let’s go back to the Arthritis Foundation. Their website says, “we are fighting to address key policy issues on both the state and federal levels with lawmakers, insurers, employers and regulators. Take action with us to improve access to care, learn more about advocating for yourself, and get involved locally!” (x).
The AF’s website includes Advocacy 101; Policy Resources, to improve your knowledge of state and federal laws and policies; the Ambassador Program; Legislator Lookup, where you can look up where your representative falls in regards to specific policies; and more.
Part of these strategies includes something I’ve participated in many times, which is pre-filled emails and social media posts to send to your representative. You enter your zip code, and then the pre-filled email changes based on whether or not they support a topic. It includes prompts for you to add, including what city you live in, your story, and why you think they should support your cause. These pre-filled prompts often include the number of people in your state with arthritis and how many people are disabled because of it. It’s pretty awesome.
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Fundraise for them
This is probably the most obvious one: fundraise for these organizations.
If you like an organization but you’re not up for directly advocating online or to elected officials, fundraising is a big help.
Let’s look at the Arthritis Foundation again. In addition to other events, they have 2 big fundraisers: the Walk To Cure Arthritis and the Jingle Bell Run. The Jingle Bell Run is a traditional fundraiser where you register and donate and things go directly to the AF. But the Walk is fun in that you can form a team, set a goal for donations for yourself and your tea, and then all go together.
And, technically, you don’t even need to do the actual walk part. You can just show up.
Here are some pics from past Walks:
By raising money for the organizations, you are helping them continue to run the programs you love, including research.
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Improving Your Skills
Go through the Social Health Network Patient Leader Certification Program
I just finished this myself!
Social Health Network – formerly known as WEGO Health – is a community in which “we empower patients, caregivers, and healthcare professionals by providing a broad-reaching platform with the goal of bringing empathy, support, and humanity to the healthcare industry” (x). I worked with WEGO Health for years, and while I’ll admit I was skeptical of the change, I’ve enjoyed it so far.
Especially because they have a new Patient Leader Certification Program! This program is “designed to boost your credibility, increase your impact, and amplify your voice” (x). Completing the certification is one way to boost your advocacy knowledge and creativity, and demonstrating the badge shows others that you’re serious about your advocacy.
I enjoyed it and learned from it, and not only have I been an advocate for a long time, but I also contributed to it.
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Attend seminars
Lots of organizations have webinars and seminars designed to help you. They might be focused on a specific issue, getting started within an ambassador program, on the latest research regarding your condition, or something else entirely.
You never know what’s out there and what’s happening in the sphere. This is one of the reasons why it’s helpful to subscribe to newsletters; you can learn about upcoming events you might be interested in.
Webinars and seminars are also helpful if you have a hard time learning from articles alone. Which is not a problem; everyone learns differently. But if that’s you, definitely search out webinars and seminars.
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Finally, I would be remiss if I didn’t suggest you start building your own network in which to share your story and help others. Doing this adds a sense of purpose as well as providing a network that you control. You share what you want when you want.
Whether you add this facet to your existing network or create a new one is up to you. I did advocacy work within my personal network for years before starting this blog and channeling it through it.
I will say, though, if you’re not enthused by doing this, then don’t do it. It is a LOT of work, and you do have to feel called to it.
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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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