Advocacy in all its glory!
As a professional who has worked in Human Services for 20+ years and had to deal with legislators, federal regulators, etc. I am more familiar than I necessarily ever thought or wanted to be. That said, I can also say with absolute certainty and many years of experience it is crucial for any movement that advocacy take place. By that I mean that if we want to have funding designated and earmarked for arthritis research and treatment we MUST tell our stories, educate the stakeholders and decision makers and ensure that our voices are heard.
There are an infinite number of other equally impressive issues out there vying for attention and legislation and funding consideration. It is only through consistent, concise, clear and compelling messaging that the true story of arthritis and its impact on the lives of millions of Americans will be told.
How does this translate into action on your part? Well, you can advocate and educate as much or as little as you are comfortable with. Sometimes it just happens in the context of the moment and that is just fine. For example if I am at a social event and someone asks about a neoprene brace I might be wearing I can mention to them I have Rheumatoid Arthritis which often leads to further questions which I am more than happy to respond to! I do try to temper my responses to how much I think a person can handle at any given time....takes practice but eventually that comes pretty easy.
More formally, you can advocate by keeping up with legislative happenings by checking in with the various groups who keep us informed on pending bills before Congress or other actions and then sharing your suggestions to your own specific legislator. The most powerful voice that Congressmen hear are those of their constituents. That has been told to me over and over by legislators and it's 100% true. Never underestimate your power as a voter. When there is something pending call, write, email, tweet, etc. with your thoughts and story. There is simply nothing more powerful than each of our voices.
Staying informed is not only important for your own personal RA management but it allows you to speak and advocate more confidently with the key people involved. There are a plethora of sources to go to for reliable and documented information, one of which is this website. Explore and enjoy the process. It is so empowering to build your knowledge base not only for advocacy but because it has purpose for you personally. I recall quite clearly that one of the most significant coping strategies during my early years with RA was doing research and learning everything I could about the disease. I not only read voraciously on the subject, I watched videos, participated in online chat groups and forums and went to RA Support Groups. These are all opportunities to build your knowledge base. As a result when the opportunity arises OR you seek out the opportunity, advocacy comes quite naturally and easily.
For me, advocacy is a much a part of managing my RA as any other component and equally as crucial!
Have you managed RA fatigue better than you used to?