One of the most common statements that I have heard over the past few years, from people living with rheumatoid arthritis, is the importance of trying to make others–family members, friends, co-workers, and complete strangers–aware of how severe an impact this disease has on our lives. Actually, what we need goes beyond just having people understand the nature of this and other autoimmune disorders; although without a doubt, this type of education is a good start. What we need is support, a strong network of individuals who continue to let us know that they know what we are going through.
Sometimes the best support in the world is that email from an old college classmate that arrives, just as you’re dealing with another challenging start to your day. Other times, support includes a small token of financial help, which is profoundly appreciated especially when money is low and you’re wondering how you’re possibly going to pay for all of the medical expenses which never end. This support need not always be based on the pain and disability which, at times, overwhelms our lives. A simple conversation, joke, or anything else that takes our minds momentarily off our constant struggles…well, these can be the greatest gifts of all.
By authoring this widely read blog over that past few years, I have been fortunate enough to receive this support from individuals living all over the world. (Well, mostly in English speaking countries such as the U.S., Canada, U.K., Australia, New Zealand, and South Africa.) And even though I had not kept the fact that I live with RA a secret in my personal life, the ironic thing is that I had never really introduced this blog–or my disease–to the many, many people who have been a part of my life during one time or another, such as high school friends, college and grad school classmates, former professors, past co-workers, and extended family members.
All of this changed yesterday, though. In my desire to share my “Hope! Unlimited” mug with as many people as possible, I started digging up old emails and reaching out to friends. Even though I occasionally posted links to certain RA Guy blog posts on my personal Facebook account, and my image shows me walking with crutches , I realized that I had never really come out to many people. Although I often post a status update about the pain on a particularly bad day, I had never directly stated: I live with RA, and RA is [insert simplest explanation possible].
It feels good. It’s nice to know that today, they are many more people reading this blog…and they know exactly who I am. Sure, this blog is personal as heck at times, and I make no attempt to hide the struggles, both physical and emotional, that I face on a daily basis. But this is what it takes to increase awareness of this horrible illness with which we live.
It think the inherent reaction that we shouldn’t talk about certain things is always going to be there, but this is just one more challenge that we need to overcome.
We must keep talking about the challenges that we encounter from this disease for which there is no cure. We need to describe the good, the bad, and everything in between. We have the right to vocalize the support that we are looking for from others, whether its from our family and friends, or from our governments.
More and more people are listening. Are you talking about RA?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!