One of the things that gets me through the tough days of arthritis is the conviction that God has a plan for me. I believe that part of that plan is to help others with arthritis, chronic pain, and chronic illness, and part of that is through advocacy. In fact, next week I’ll be attending The Arthritis Foundation’s Advocacy Summit, which involves meetings on Capitol Hill. But you don’t have to go to Washington, D.C. or your nation’s capital in order to advocate for others and to have your voice heard.
1. Write letters to your representatives, senators, or other government officials
These are the people who create laws, allocate funding, and as a whole run our communities. Express your concerns to them, why you do or don’t support a bill, or how you are affected by what they do. Explain your concerns and difficulties in a clear and compelling manner. If you don’t want to write a letter or you are concerned that they won’t get and read it, find some other way to get your feelings across, like meeting them or starting a petition. It may not seem like much, but how will they know what their constituents want if they are not told?
2. Speak up on social media, blogs, or in person
So many people don’t know what life is like for the chronically ill or how to help them. You can share statistics, explain how you are affected, describe ways others can help, and more right from your living room. Taylor created a shirt where 20% of proceeds go to animal shelters, which is a great way to make a tangible difference, and she wrote a blog post explaining what she is doing and why. That’s a great example of how you can make a difference in your community regardless of what cause you are fighting for.
3. Give feedback to doctors, hospitals, companies, etc. on their products
How can they know if what they’re doing is good or bad if they’re not told? I’m totally guilty of going to a doctor’s appointment, being upset, and then taking it out on social media. In the most recent case, the doctor most certainly knew how I felt about the entire thing. But in other circumstances, maybe they didn’t know how I felt. Doesn’t it make sense to tell the person who you have a problem with that you have a problem instead of just talking about it on the Internet and hoping they find it? So if you’re unhappy with someone – a pharmaceutical company, a doctor’s office, a pharmacy, whatever – try and give them that feedback.
4. Participate in research
Help influence the healthcare industry by making your experiences heard. There are lots of ways you can do this depending on your health concern, but I have an incredibly easy way for arthritis patients to participate in research (and make money!) that doesn’t involve hours of your time or traveling at all. YourCareMoments (www.yourcaremoments.com) is a site where you participate in at least 1 survey a week about your arthritis medication, each lasting 5-7 minutes, and you get paid $5 for each survey. This ensures that your healthcare experiences are heard and you are compensated for your time. I have tested it out and it really is as easy as I say!
The point of these surveys are for pharmaceutical companies to get feedback. I have spoken to someone from the company, and they are genuinely looking for your voice! This is not really a do-it-once-and-never-again opportunity, but it is up to you how long you work with them. You don’t have to take every survey, and, by the way, they’re anonymous. Each survey has a 2-week window before it expires, and you will be paid via PayPal within 2-3 days.
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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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