As you know if you’ve been following me for a while, I do some advocacy work for arthritis patients. I’ve attended the Arthritis Foundation Advocacy Summit in 2015 and 2016 – which involved meeting with Massachusetts representatives and senators – and I’m a Cure Arthritis Ambassador for the Arthritis National Research Foundation. I also use this blog as a form of advocacy through discussing life with chronic illness, clearing up misconceptions of arthritis and chronic pain, sharing how you can help people with arthritis, and more.
With all the talk after the election about repealing the Affordable Care Act, this seems like a good time to talk about advocacy for patients. I’m not going to talk about the issues I have with the possible repealing of it – or the talk from our new president-elect regarding whether or not he or Congress will try to repeal it – or how it affects chronically ill people. However, I will use all the discussion of the ACA as a reason to talk about how to become an advocate for patients. I hope this will help you regardless of the possible changes to American healthcare policy, and regardless of if you’re American.
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. Sometimes they’re along the lines of, “I thought arthritis was just a thing that happens when you get older,” and in that case it helps for me to know that two thirds of people with arthritis are under 65. Other times, they want to know how arthritis medications work or they assume that arthritis isn’t a big deal. In all of these cases, the self-education I’ve done allows me to answer their questions in a calm way.
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.
Platform: 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.
Identifying Goals: 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. This year, it was important to me that I a) attend the Advocacy Summit and meet with the representatives I did last year, b) raise $2,000 for the Walk To Cure Arthritis, c) educate people about arthritis, especially their understanding of chronic pain patients and opioid medications. I went to the Summit; we raised $4,000 for the Walk; and my post about opioid medications was featured on Huffington Post, where it was liked over 800 times, and I have had many conversations with people about it on social media that led to many reevaluating their opinion. Because of this, my advocacy has felt like a success this year.
Not Losing 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.
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.
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