Rheumatoid arthritis (RA) is one of those things in life where you just don’t get it, until you get it. I can’t make the words, phrases, and analogies come together to capture the essence of the disease and its impact on my life. Perhaps a Shakespeare or Mark Twain could conjure the prose to adequately describe RA so that people without it could understand it better. Until then, I just want to share a few things that I wish people knew about RA.
You can’t gut your way through it. Lord knows I have tried to push myself through a rough day or a flare with simple determination and mind-over-matter techniques, but it just doesn’t work. I consider myself a pretty tough cookie with a high pain tolerance, but RA is more than pain and discomfort. It’s your immune system attacking your body, and with your immune system being the culprit, there’s nothing there to help you feel better. You can’t will your way through it. If it’s bad day, it’s bad day. It’s also often unexpected. It’s not that I don’t want to join friends for dinner or book club or an afternoon at the pool, it’s that I can’t. My body just can’t take the physical and mental exertion.
RA is a chronic condition. RA lasts a lifetime and there's no cure. You can manage it with pharmaceuticals, lifestyle changes, and patience. The fact that my RA may not get better is OK. I have come to accept that, and I urge you to consider the same if you have someone in your life with RA. We’re all aging and changing as we journey through life, and our bodies may not maintain the health we had in our youth.
It isn’t osteoarthritis! Osteoarthritis is degeneration of a joint caused by wear and tear. It’s consistent with that joint and doesn’t move around the body the way RA does. My hands are fine right now, but my knees aren’t. Next week that may be different. My knees could be perfectly fine, but I might have trouble opening a door or holding a glass. The conditions are different and treated differently. I’m not saying one is worse than the other, but they are different.
Every journey is different. I appreciate people giving me advice about what worked for their friend, neighbor, or family member when dealing with RA, but I’m floored by the number of people that get mad when their advice doesn’t work. Because RA is an autoimmune disease, every person’s journey is different. While your aunt’s medication may be a wonder drug for her, unfortunately it may not work for me. That’s OK. There are other drugs to try. The same is true for diet changes, natural supplements, and lifestyle adjustments. They may work for some but not for others. Please don’t make a person with RA feel bad because your remedy didn’t work for them.
Show compassion instead of pity. My best friend is so good about asking how I’m feeling without sorrow dripping from her voice. I wish I could bottle her compassion and share it with others. Nothing is worse than someone with grief-stricken eyes and labored breath offering you wishes for feeling better. Don’t feel sorry for me, just offer words of encouragement -- tell me to hang in there or say you’re sending positive vibes. Try to remove yourself from the world you’re living in and live in someone else’s shoes for just a little while. Try to apply this to any situation that’s different than yours. Practice compassion and empathy rather than pity.
I don’t expect anyone to fully “get” what it’s like to live with RA, but I’m grateful for the ways that my friends and family try to empathize and understand.
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