Your RA is Not My RA: Educating the RA Communityby Cathy Kramer Patient Advocate
If you are reading this, you most likely belong to a community of people who share the diagnosis of rheumatoid arthritis (RA). When reading about RA, you quickly learn that it is an autoimmune disease that is known for affecting the joints. Folks with RA often experience extreme swelling and pain. Energy levels can drop. It may be described as an invisible illness because it is not always visible to others. You may also learn that it can affect your eyes, your jaw, your lungs, and more.
What you don’t read or sometimes even discover while living with RA is that your RA is not my RA.
To be a community of people who truly support each other, it is important to understand that RA affects each of us differently. Too often friends in our community are discredited because they present themselves as being happy, work a job, attend social gatherings, or participate in sports, and workout regularly. Comments toward these people are often angry or go as far as accusing them of not really having RA.
We should support different experiences of RA
Ten years of blogging have taught me that to get support within the RA community, there is one major requirement: You must be in pain. Anything outside of this can be viewed as showing off or not fully understanding RA.
It breaks my heart when a community member fears showing photos of themselves working out or enjoying an evening with their family because they will receive comments such as: “Must be nice,” or “Wish I could do that, but my joints are in too much pain.” What would be the harm in replying: “Happy for you,” or “Thanks for showing another side of RA?”
A community that cannot completely understand the full range of RA can be detrimental to those who need a safe place to share. It doesn’t leave room for us to respond to our RA based on who we are as individuals — the way we were raised, our past and previous experiences, and our individual makeup. Plus, it doesn’t allow for the fact that RA can be defined as mild, moderate, or severe – even within the same person throughout their journey.
We are not all the same. Just as we each respond differently to medications, we each see life with RA in our own unique ways.
We can find ways to be happy with RA
It is understandable that RA often goes hand-in-hand with depression. RA is unpredictable and can put a stop to goals set for yourself. However, some of us have to live each day working hard to find the joy in life. It is who we are as individuals — our mode of survival. It doesn’t mean we aren’t affected by RA, it simply means we have chosen to find what is right with our lives.
Working a job is possible for some
The day my husband had to drive me to my part-time job because I could not safely turn the steering wheel was a low for me. However, we needed the money and more importantly, the classroom allowed my mind to be distracted by the needs of others and put RA to the side for a short time. Today, thanks to the right combination of medications for my body, I drive myself to a full-time job.
Sometimes social gatherings are possible, sometimes not
Many of us feel guilty because we have to cancel plans we have made with friends and family. Yet, others keep going despite what is happening with their RA. Why? Perhaps that day they felt good or perhaps because being social brings peace to a body that needs relief.
Working out is different for each of us
I used to hang wet washcloths over the bathroom faucet because it was too painful to wring out the water. Today, my body allows me to work out regularly. This doesn’t mean I don’t understand the pain fellow RA folks are experiencing, it just means my RA is in a different place today. Sharing is my way of giving someone else hope.
We need to have each other's backs
Your RA is not my RA. How I live each day with it and how it progresses is my story, not yours. Likewise, your story is not mine. Yet, one thing we all share is the need for support. We need to feel safe from negative comments when sharing a morning when we wake up and have to crawl down the stairs, but also a day when we go on a hike or enjoy an evening out with our families.
Let’s make a deal to work together as a community to support each other wherever our RA is today and wherever it may be tomorrow. Let’s open up our hearts and minds to the full spectrum of RA and learn to support each other without hateful and hurtful words. Let’s be here for each other, wherever our RA journeys take us.