Your relationships will get a boost when you open up to your friends and family about the ways rheumatoid arthritis affects you. A little straight talk helps folks understand just what you're going through.
"People are not going to know about rheumatoid arthritis like other more common conditions such as heart disease or breast cancer," says Elaine Husni, MD, director of the Arthritis & Musculoskeletal Treatment Center at the Cleveland Clinic. So people with RA, she says, may need to explain to others what it's all about.
Describe Your Condition
Andrew Lumpe, 55, of Seattle was diagnosed with RA in 2009. He's found that educating friends, especially people he hasn't seen in a while, makes a big difference.
"I'll say that RA is an autoimmune disease and compare it to others like lupus, multiple sclerosis, or type 1 diabetes," he says. "Most people can relate to those and know how serious they are and get a better sense of what I'm going through. Otherwise, they think it's arthritis like their grandmother had, but RA is much different."
Early on, many people with rheumatoid arthritis don't show many physical signs. "So people may see you and think you look fine, so you should be fine. I tell my patients it's OK to tell people that you need to slow down," Husni says.
For example, your joints may feel stiffer in the morning, and it can take some time to get out of bed and start your day. "Talk to your significant other about how you feel in the mornings and what he or she can do to help you," Husni says.
For instance, you may need to ask your partner to take care of the kids when the day begins. Or if friends want to do an activity, explain to them that mornings are hard for you and midday would be better.
Anna Marie Meyer, 55, who lives in Portland, OR, knows firsthand the importance of being straightforward. She was diagnosed with RA in 2011.
"I used to love hosting others in my home," she says. "I'd make a seven-course meal and use the china and crystal, but I can't do that anymore. Now I ask friends to bring dishes for a potluck. I use paper plates. And I delegate responsibilities, like having someone take out the trash or wash some dishes."
One of the challenges with RA is it can be hard to make plans. You might not know how you'll feel days, weeks, or months ahead. "It's OK to slow down and rearrange things," Husni says.
"You may need to explain to other people that you're going through a flare, but you'll be back in action when it resolves. You can say, 'I'm not saying 'no' forever, just right now, but I'd love to get together when I'm feeling better.'"
Meyer says that when she has to turn down an invitation, she asks for a rain check. "And then I follow up when I'm feeling better."
Keep Close Friends and Family in the Loop
Lumpe, a father of four, says he's open with his family. "I'd purposely get out my medication at the kitchen table and take it in front of my kids," he says. "They've seen me put an injection into my stomach. I've had my kids take me down to the infusion center. I don't try to hide it at all. It shows them the seriousness of the disease."
He's found that it's helped his older kids, who are in their 20s, become more sensitive to what he's going through. "They'll come over to the house and help out with house repairs or other things I can't do."
He's also says it's helpful to give others a short explanation of why you're doing something that may be a little unusual.
"If I'm in a meeting or, I might have to get up and move around," Lumpe says. "Instead of it being awkward, I'll just say, 'I can't stay in one position really long or I get stiff so I need to move around.'"
There have also been times when he and his wife have had guests over and he's had to go to bed early because he's hurting or he's tired.
"I'll tell them that I'm in a lot of pain so I have to go upstairs and go to bed, but they're welcome to stay as long as they want," he says. "And they usually do."
Remember that your doctor can also help you find the right words if you need to tell people about your condition.
"As physicians, we ask about your joints and related symptoms because we want to make sure the medicines you're on are working," Husni says. "But we also have a lot of experience talking about the disease with others. If you feel like you don't know how to communicate about something, we can give you some skills or suggestions that help."