If you have rheumatoid arthritis (RA), you know how much of a toll it can quickly take on your life. The autoimmune disease strikes joints and tissues with swelling and pain, affecting everyday activities. Fighting RA and its pain causes exhaustion in most people who have it, sometimes driving them to bedrest or inactivity for days or weeks. RA’s effects can linger and increase with age, if not treated, and there’s no cure.
These symptoms and complications are huge challenges for people with RA. But there’s another challenge in having RA: Talking to people about your condition.
Why it’s hard to talk about RA
Two realities make having RA difficult to discuss. The first is that most of its symptoms aren’t visible, although some, such as the skin rash vasculitis, are. That may make you reluctant to bring it up because others might not believe that you’re sick.
The other problem is that it can be a downright downer to discuss. Blogger Janine Monty writes about her RA at Arthritic Chick. When she first received the RA diagnosis and began to talk to those around her, she says, “I learned that the quickest way to end a phone conversation, a visit, or a coffee date was to start talking about my pain.”
Deciding who to tell
Some people decide to tell everyone about their condition, while others choose an intimate circle. It’s up to you which way you’ll go. You may decide that facing the disease head-on means putting an RA-related bumper sticker on your car. On the other hand, if you feel like your health is a private matter, pick a chosen few you’ll entrust with your information. This short list will no doubt include your closest family members and might include people you work with.
Deciding how much to tell
The thing about discussing RA is that there’s quite a lot to discuss. The list of symptoms is unique to each person, but it can be very long. How much will you tell about your condition? You could be as brief as a quick declaration and definition: “I have rheumatoid arthritis. It’s an autoimmune condition that mostly attacks my joints.”
Beyond that, you could consider talking about how symptoms affect you. For example, “RA means I have a lot of pain and need extra rest.” Or, rather than talking about how RA affects you in general, you might choose to explain how you’re doing on a daily basis and how that might affect your abilities: “My RA is affecting my wrists today. Can you help me pick up these files?”
Of course, you can never know when meeting someone how they’ll react to your sharing, but you’ll probably pick up over time on clues that someone feels overwhelmed with your news. Rather than talking to them, it might be appropriate to share written information on RA by directing them to a website or other resource.
Talking about RA at work
You need to take several things into consideration when deciding if you’ll tell your manager and co-workers about your RA. You aren’t required to talk about a medical condition with anyone, and if RA symptoms don’t affect your work, you might choose not to bring it up at all. However, if you need time off for appointments or special accommodations at your workplace, it’s probably a good idea to let certain people know you have RA.
Depending on how your company is structured, you could start with your immediate supervisor or talk with someone in your human resources department. Whoever you talk to, make it clear why you’re telling them. You might say, “I wanted to let you know I have rheumatoid arthritis. That means I sometimes need to stand at my desk to take pressure off my joints.”
When it comes to your workplace rights in relation to RA, you might find the Job Accommodation Network website helpful: It’s a federal clearinghouse of information on the Americans with Disabilities Act.
Talking about RA with kids
If your children are small, you might feel less inclined to talk with them directly about RA and more focused on folding those discussions into daily activities. Jessica Sanders, 34, is the mother of three children under age 13. She’s never sat her kids down for an RA talk, but she says, “They are well aware of my arthritis but how we refer to it is, ‘Can you help me with this? My arthritis won’t let me do that today.’”
Some kids might be scared when they learn that RA isn’t going to go away — and might get worse. Focus on the positive aspects of your situation: Let your kids know that you have a doctor who supports you and that literally thousands of specially trained scientists are improving treatments and searching for a cure for RA.
Talking with intimate partners
RA can be an unwelcome intruder in the bedroom, causing vaginal dryness and sensitivity for women who have it and possibly causing erectile dysfunction in men. Plus, no one feels sexy when their body is uncomfortable. But a healthy sex life is an important component of personal identity and happiness.
“In my opinion, the most important thing when talking to your partner about RA is to ask questions and listen to each other,” says Ara Dikranian, MD, a rheumatologist at the Cabrillo Center for Rheumatic Disease. “If a chronic condition is causing pain, there’s no way for your partner to know unless you say so.”
Explaining that you have a chronic condition can be difficult. You might feel uncomfortable bringing extra attention to yourself or implying that your condition makes you somehow less capable. Over time, you’ll get a better sense for when and how to talk about your RA. Go slowly and listen to your own interior voice that tells you whether this person and this moment are right for you.