9 Ways to Advocate for Rheumatoid Arthritis
Lene Andersen | May 2nd 2017
There are a lot of misperceptions about rheumatoid arthritis (RA), and they can make it more difficult to live with this condition. You have the power to help create understanding and bust RA myths, both in your daily life and during special awareness events. When more people are aware of what RA is and what it’s like to live with it, not only will your life be easier, but this increased awareness will also create long-lasting change benefiting the community.
Talking about RA
You probably already talk to family and close friends about living with RA. Expanding the circle of people who you tell about your condition can be a relatively low-energy way of creating awareness. Introduce the topic and keep it fairly short at first. Make it clear that you will be happy to answer questions. Do some research to make sure that you are sharing correct information, and perhaps have a couple of especially good articles you can share.
Putting on something blue, the arthritis awareness color, can be a fun way to start conversations. Use blue nail color or lipstick, color your hair blue (or maybe just a stripe), or wear blue clothes. You can also use a blue background for your social media profile photos, or decorate your home with blue accents. You can also find awareness jewelry created by people in the chronic illness community on Etsy or Ebay.
Your story of RA
Sharing your story of living with RA is a powerful way to raise awareness. It helps others understand on a deeper level as they hear your unique tales of diagnosis, struggles with pain and fatigue, hopefully finding a way to feel better, and coping with it all. You can share your story through writing about it on a blog or website, or doing videos that you can post on social media. Share yourself in the way that feels most meaningful and comfortable to you.
Arthritis walks and runs
Have you ever done an arthritis walk or run? It’s a fun way to get physically active, raise money for research and support programs, and meet others like you. Create a team of family and friends or coworkers, and have a friendly competition to see who can raise the most money for the cause. Participating in this kind of event can also be incredibly powerful and moving as you realize that everyone around you is, in a way, doing this for you.
You. On the Hill.
Can you see yourself testifying to Congress? It can be effective and empowering to speak directly to the people who make the laws that govern how you get health care, access to medication, and support at work and at home. Many non-profit organizations have advocacy programs that teach you how to effectively connect with your elected representatives. This can include letter writing, calling constituency offices, and even meeting directly with the people you and your neighbors elected to office.
Start something strong
Doing something especially for others like you can be a force for education and support in the community. You could get together with others to start an in-person support group, a Twitter Chat, Facebook group, or maybe even a non-profit foundation. This will likely require a fair amount of energy and work, so choosing a time when you are doing well will make it more likely that you and your colleagues will have the impact you envisioned.
Increasingly, conferences are bringing together people with RA and other chronic illnesses with doctors, health care professionals, pharmaceutical companies, and more. We who live with the condition are rightfully seen as a valuable source of real-life information, whose skills and stories can inform the development of advocacy programs and research. It also gets you in the same room as other people who are passionate about advocacy, which is an empowering experience.
We all benefit from research. We have more effective medications and treatment approaches than in the past because research found a better way. Support programs and advocacy exist because research showed they were necessary and effective. Participating in research will help build a better future for us all. You may want to check out clinical trials or answer surveys whenever a researcher is doing that kind of study.
Live your life, follow your dreams, and include RA as a part of it all in words and actions. This can be one of the best ways to show others what RA is and the impact it has on the reality of the people who have the condition. Don’t hide when you’re taking meds, never hide your body if it has scars, swelling, or other signs of RA, and be honest about the compromises you have to make because of chronic illness. When you share all of your life, others come to understand.