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.

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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:

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    […] 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 […]

    February 12, 2019 at 7:01 am
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