1. Keep It Simple
Take the person’s knowledge of health, generally, into consideration when explaining your situation. Unless you know the person you’re speaking to is familiar with medical jargon, look for simpler ways to say what RA is and how it affects you, recommends Dr. Rozycki.
For instance, instead of saying that your RA is a systemic autoimmune disease, you could say that your RA is a disease where your immune system attacks the joints throughout your entire body. If you’re talking about your symptoms, you can say something straightforward like, “My hands are swollen and I need to take a break”’ or “I need to stop and rest my feet for a bit,” Rozycki adds.
2. Use Analogies
“As a therapist working with patients with chronic diseases like RA, I have learned that the major challenge isn’t the disease itself, it’s managing other people’s expectations,” says Janee Young, a licensed marriage and family therapist and the clinical director of Wellness Detox of LA in Los Angeles. To help people better understand what you’re experiencing, analogies can help.
Comparing your fatigue to something familiar that the person has been through — a virus like the flu, for instance — may help them understand the intensity of your symptoms. To convey what stiffness and soreness feels like, you might say that you woke up feeling the way someone does after overdoing it at the gym — or use a different analogy that feels true to your level of pain and stiffness.
3. Describe the Functional Effects of Your Symptoms
It may be hard to describe your level of pain to another person, but it is possible to say how your pain limits your function, Rozycki says. For example, “The joints in my fingers hurt so much I can’t open a jar or carry a bag in my hand.”
On the other hand, it’s not always necessary to share tons of details, especially with people you don’t know that well. “If it’s a situation where the RA patient is around people who do not know about the disease, they can just as easily say, ‘I can’t get this jar. Can you give it a try?’ without having to launch into an explanation of their private health information,” says Rozycki. In most cases, the person will be understanding and willing to help.
4. Ask for Specific Accommodations
Even with thoughtful explanations, it may still be hard for some people to grasp what life with RA is actually like. Rather than asking loved ones to understand your experience, which can feel abstract, try managing their expectations by asking them for specific behaviors, Young suggests.
In practice, that might mean telling them things like, “It makes things easier for me if plans are flexible,” or “I appreciate advance notice when planning events,” she recommends. Those are things most people will want to accommodate, even if they can’t fully understand why flexible plans or advance notice is so important for you.
5. Talk About the Difference Between Good and Bad Days
RA symptoms aren’t static. Rheumatoid arthritis flares, during which pain and swelling or functional limitations happen, have been shown to be linked with changes in sleep patterns, emotional distress, or changing or discontinuing a medication. If you’re able to be very active or do all of your typical activities when your RA is well-controlled, family members or friends may hold up these days as examples of what you’re able to accomplish — even though your capacity on bad days can be very different.
“It may be confusing to family and friends when they see you can tolerate 20-mile bike rides, but then at other times, during flares, struggle to walk from the driveway to the house,” Rozycki says.
This disconnect can be frustrating for everyone, so it’s worth addressing with loved ones. “I tell my clients to explain that a good day does not mean that RA has left them forever; rather it is just another data point in an ever-changing continuum,” Young says.
6. Let Them Know How They Can Help
Help can come in many forms. It could be taking on certain household chores, making the effort to learn more about RA, or accompanying you to a healthcare appointment, for instance. That said, your loved ones can’t read your mind — so you’ll have to ask for what you need.
Asking for help isn’t always easy, but it really is one of the best ways to give your loved one a sense of how RA impacts you. “In my experience, the best conversations with loved ones aren’t necessarily about educating them about how hard RA is to live with. Rather they’re about showing them ways in which they can function well as part of a team that supports someone whose condition changes each day,” Young says.
7. Give Them Updates When Things Change
“That means that you may need to point out when someone’s expectations aren’t matching up with your current abilities. I frequently remind my clients to tell them, ‘The way you were supporting me two years ago may not be the same kind of support I need today,’” says Young.
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