Friends are an important part of life—they cheer us up, encourage us, celebrate our successes, and add meaning to our lives. Many of us with rheumatoid arthritis (RA) rely on a strong network of friends to help us get through some of the challenges we face. Those friendships can be very sweet. And as we meet others who have RA, through support groups or online chats, our RA can connect us with others in a new way.
However, being diagnosed with RA can also change our previous friendships in ways that, quite honestly, can sometimes be a bit surprising. The challenge of adjusting to new physical realities often is compounded by adjusting to new relationship realities, which can bring disappointments, as well as new discoveries about friendships that are true and long-lasting.
RA can make you feel like you’re not yourself anymore. You can’t always do the same things you used to do, or you may do the same things in a different way. You often find you only have so much energy. Those of us with RA talk about our “spoons” of energy, and we learn to use our spoons well. We know that if we make the extra effort to do Activity A, we might have to scale back or forgo Activity B. We quickly become quite particular about how or with whom we spend our spoons.
We also learn that our days can change quickly. We may plan for lunch with a friend, wake up feeling that we can manage it, but have a different message from our body by the time that noon rolls around. Many of us have to change plans or cancel at the last minute, and we find it very hard to plan a month, a week, or sometimes even a day in advance!
My true friends who know about my condition have learned to roll with it. They understand that my behavior is because of my physical realities, and they don’t take it personally. We are glad for the moments when it works out for us to get together. I value these friendships greatly.
I also value the new friends that I’ve made through this disease. For me, it started when I was getting infusions. There were eight of us on the same infusion schedule, and over the course of time, we became friends. It was uplifting to be able to share with each other, to compare notes on relevant topics, such as how to make swelling go down, or to encourage each other when a family member didn’t understand, or we couldn’t go to a child’s game.
After some time, we decided to make it official and launched a support group through the Arthritis Foundation. We work to keep our sessions positive, so we came up with a structure for our meetings, focusing on a specific topic, such as coping with the holidays.
I often talk with my support group about the Vectra® test, and many of our group members have begun getting Vectra after learning about it. We share our scores with each other and introduce new members to the test. I’m a true believer that Vectra is an important tool in gaining control of your RA. Vectra allows RA patients to find out if their treatment is working without having to wait a year. Our group members support each other with encouragement and suggestions when a score goes up, and we celebrate when a member’s score goes down.
While we work hard to keep things positive, our group also functions as a safe space to vent. Sometimes the people who love us most, who really try to understand, just don’t understand it in the same way as another person who has RA is able to. I love playing with my grandson, who lives in a different state. As much as I want to see him at every opportunity, sometimes I’m just not able. I don’t want to disappoint him. I shared this with my support group friends, who understand that in a different way than my grandson or his parents can, because they experience the same emotions and fears in their own relationships.
Living with RA is an ongoing journey with many layers of adjustment, both physically and in many other areas of life. Knowing you are not alone in these experiences can be a big boost.