Learning to live with rheumatoid arthritis (RA) is no easy feat. It takes time and patience to comprehend what RA has in store for our bodies and how we will personally deal with it. To make matters worse as we grapple with this life changing event, we must educate our family, friends, and even our coworkers about RA when we have little energy to spare. We may come to realize that the people in our life don’t respond the way we had expected, leaving us to wonder: “Why don’t they understand what I am going through?”
"I am in pain, but my family and friends don’t understand." This is something I hear a lot and something I have experienced myself. The truth is they aren’t ever going to understand our RA one hundred percent. How can they? We ourselves often can’t understand it. One minute we feel fine and ready to conquer the world and an hour later we can’t move from the sofa. Expecting those around us to magically understand exactly what is happening with our RA is a pretty high expectation.
"I tell them I am in pain, but they don’t listen." For years I felt that I had to tell those closest to me that I was in pain repeatedly. I was afraid that if I didn’t keep telling them, they might forget. Finally, I got it! They aren’t going to forget. Those closest to me see the pain every single day.
Time has allowed me to understand that my friends and family have the difficult job of seeing my pain but not knowing how to relieve it. If you’ve ever had a sick child, you know the feeling of inadequacy you feel when there is very little for you to do but wait it out. Our loved ones have to do that over and over, not knowing if a day will come when the pain disappears.
"My family and friends expect too much from me." Many of us with rheumatoid arthritis think we can continue to live exactly as we lived before we started a relationship with RA. In my experience, that just isn’t going to happen. Whether you want to accept it or not, RA is a part of your life and carving out time for it is mandatory. You are the expert when it comes to your limits and your responsibility to let those around you know what you can and can’t do. With RA being so fickle, you must listen to your body each day, hour, and even minute to decide what you can do. Don’t put that responsibility on others. It isn’t fair to you or them.
"Why do people always want to give advice on how to cure my RA?" This drives me crazy. I had a friend who for years told me eating plenty of cherries each day would cure me. When she started in, I wanted to take my scarf off, wrap it around her mouth, and throw her in a closet. But the truth is, each person deals with this illness in their own unique way. Some people need to protect us, some need to talk about it constantly and know how we are doing each minute of the day, while others may need to ignore our disease, and some need to give us unwanted advice. As annoying as it is, they mean well, and they are reacting in a way that fits who they are.
"I had tendinitis recently. Is that how RA feels?" Oh my! If you can control the eye rolling that comes with this one, I totally admire you. If they only knew! I guess that is the problem. Until you have experienced the pain that comes with RA, you just don’t get it. Over the years, I have had several friends go through divorces. While I can completely imagine how devastating it is, I will never understand it completely because it is not something I have gone through in my own life. In all honesty, I hope my friends and family never have to fully understand the pain I feel during a major flare. I would never wish that on another person.
Each relationship we have has an individual person tied to it with previous experiences and perspectives. Accepting that they will never know exactly how you feel or how to comfort you takes time. It is part of the journey. It’s a lot to ask when you are already in pain, but please, share your needs often and then be patient. The people in your life love you and want good things for you, even if it isn’t always apparent.
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Cathy Kramer shares her positive voice as an advocate in the rheumatoid arthritis, chronic illness, and self-care communities. Her ongoing journey with RA can be found on her blog The Life and Adventures of Cateepoo. She often hangs out @cateepoo88 on Twitter, Instagram, and Facebook. Watch her story on HealthCentral.