Some people may sympathize with your condition right away (or at least try to); others may ask invasive, frustrating questions or doubt that it’s “really that bad.” “Even if you get along with your family and friends, that doesn’t mean they understand the extent of what you’re going through,” says Jacob Hascalovici, MD, chief medical officer at Clearing and clinical assistant professor of neurology, physical medication and rehabilitation, and anesthesiology at Albert Einstein College of Medicine in New York City. While others may not be fully able to understand your RA, they can learn how to listen. Read on to hear what people who have RA wish those closest to them understood.
1. “Our energy is limited, so we need to rest and set boundaries to conserve it.”
You know you need to take breaks throughout the day to conserve energy, but for people who don’t have RA, it can look like you’re being lazy or using excuses to get out of plans. If someone is pressuring you to do more than you can, try to spell out why rest is vital to managing RA. “Explaining why can help others get a grasp on what’s happening,” says Staci Stringer, 36, who’s been living with RA for more than 17 years. Stringer is also a member of the board of directors of the Arthritis National Research Foundation and author behind the arthritis blog A Beautiful Mess. “We often try to hide it, so when people do see what we’re living with — it can stop them in their tracks.” “The demands of social time and being around others can drain you or worsen your pain and other RA symptoms,” says Dr. Hascalovici. “I advise explaining that people who have RA often are only working with 40 to 50 percent of the energy most people have, but they’re still trying to get the same amount done.” This can mean weighing the physical costs of overdoing it against the benefits of activities you love. For people like Stringer, it can sometimes take multiple days to build up the energy to do something, and multiple days on the back end to recover.
2. “We’re often in some type of pain — but it’s probably nothing like your pain.”
The joint pain, stiffness, and fatigue associated with RA isn’t like your average backache, stiff neck, or knee pain — it’s unique. “I try to explain to people: If you’ve ever fallen on concrete, it’s that sort of achy feeling that you get. Then couple it with the flu, [and add] the aches and exhaustion that you get from trying to push through to be able to do normal things,” notes Stringer. “People try to minimize my pain by telling me I just need a positive outlook,” says Tatiana Capote, 30, who was diagnosed with juvenile RA at age 2, and now runs the Instagram account @realra_warrior to help others who have an invisible chronic condition feel less alone. “They compare their pain to my RA pain in an effort to connect. Despite good intentions, it can be hurtful.” Try “reminding others your pain is invisible and isn’t the same as sporadic pain,” notes Hascalovici. “Instead, it’s a regular part of life.” “One of the most irritating things is when people tell you about a diet or yoga or something that you should be doing,” says Stringer. “Typically, we’re looking for these things on our own — and we’ve probably already tried most of them.” Even if you know the person means well, you know your RA and what your body needs better than anyone. In these cases, you’re faced with a choice of how best to respond. “It depends on the situation: With an acquaintance, a simple ‘thanks’ followed by disengagement may suffice,” notes Hascalovici. “With well-meaning friends and family, you can say ‘Thank you, but,’ then explain a little more about the situation and why advice from people who don’t have RA isn’t always applicable.”
4. “We may not look ‘sick,’ but we are.”
Many people who have RA don’t necessarily look like they’re in near-constant discomfort. RA affects people of all ages, genders, and physicalities, so it’s hard for an outsider to pinpoint. There may also be pressure to minimize your pain for fear of social stigma. “Discussing my illness at work is especially challenging because I don’t want others to think I’m not capable or reliable, or that I’m faking it,” says Capote. “We don’t have to fake looking sick — we have to fake looking healthy,” adds Stringer. And in the moments you can’t or choose not to hide your pain, you may be faced with inconsiderate comments, side eyes, or worse. “On my bad days, I park in a handicapped parking space, and I’ve often received dirty looks,” says Capote. “A cop even stopped me once and made me prove that the handicap decal was mine.” Hascalovici recommends handling these situations by using the example of more familiar conditions that aren’t necessarily visible either, like heart disease or diabetes. With these conditions, there’s much more than meets the eye, and the same is true of RA. “I explain that I could do everything right and randomly wake up the next day with extreme morning stiffness and swollen, achy joints,” says Capote. “It’s hard for people to understand that my body can experience RA symptoms at any time, for no reason.” Hascalovici notes that many people who have RA are still learning about their condition and individual needs. “There are days I feel very healthy and like I’m living a normal life,” says Stringer. “And the very next day, I’ll have to be in bed. It’ll just hit me like a ton of bricks.” “It’s frustrating when people with RA have to deal with others’ judgements about why they’re in pain,” says Hascalovici. “I advise people to respond in these types of situations by choosing to disengage and focus more on self-care, by setting healthy boundaries around being believed and understood, or by saying they would rather not discuss the topic at all.”
6. “Sometimes we need help, but try not to assume we can’t take care of ourselves.”
There’s a fine line between wanting to help a person with RA and overstepping their autonomy. “I don’t like to be coddled. At this moment, I can still get up, my feet still work,” says Stringer. “But other times, I do need help. If I’m sharing my pain with you, it means I trust you — which can be really scary.” Capote notes: “Growing up, I never asked for help. In adulthood, I have learned, through years and years of practice, that the people who care about me are happy to help me and I should accept that help.” Try to be as open and honest as you can with your loved ones — not just about what you may need, but about your care limits. “Everyone involved will likely need to be gracious and flexible,” advises Hascalovici. “It’s okay to have misunderstandings or ‘get it wrong’ from time to time, from both sides. Afterwards, point out the ways you prefer to be supported and communicate that going forward.”
7. “RA is more than just physical pain.”
Friends and family may not understand that RA comes with more than joint pain — including fatigue or brain fog. “There are days where I’m having a hard day and I have to tell people that I can’t do something, or can’t have this conversation right now because my brain can’t function,” says Stringer. “I need to save my energy to get up and brush my teeth, or make a snack, or just to get through the rest of my day.” Living with a chronic condition like RA can also affect your mental health. According to a review published in Advances in Rheumatology in September 2021, the rate of depression is 2 to 3 times higher in those who have RA than in the general population. A study published in Clinical and Experimental Rheumatology in May 2020 notes that 9 to 18 percent of people who have RA also experience some form of clinical anxiety. Meanwhile, coping with RA can bring on or worsen a mental health condition, and mental health issues can worsen RA-related pain, notes Hascalovici. “One way to talk about mental health is to acknowledge that it can stress the body and be the body’s way of expressing stress.”
8. “We need our RA community.”
“Living with an autoimmune condition is very lonely — people think if you have a disease, you either beat it or it’s something that’s going to kill you. They think there’s no in-between, but I live in the between,” says Stringer. “It’s scary to think I’ll be sick for the rest of my life — and most people can’t grasp the gravity of that.” While receiving love and support from those around you is essential, there may still be moments where you need to talk to someone who really “gets it.” Engaging with resources made both for and by the arthritis community — whether through podcasts, blogs, or support groups — can help you feel “seen, heard, and truly supported by someone in your shoes,” according to Stringer. “During the worst points in my health, I felt like the world kept moving while I was sick in bed, aching,” says Capote. She then started an Instagram account to chronicle her journey with RA while connecting with others who understood her. “I found validation, support, and hope through so many strong individuals who have accomplished beautiful things despite their health.” These resources and support communities may also be a way to let those closest to you into a little piece of your world: “You can consider asking your friends and family to attend an RA support group meeting to hear from others, or share links to blogs,” says Hascalovici.
The Bottom Line
Having conversations that address the reality of your chronic condition and necessary boundaries isn’t easy — no matter where you are in your RA journey and how understanding your loved ones are trying to be. But talking about it can help you advocate for what you need and feel less alone. “Most people who are living with chronic pain just want to be heard and have someone be there with them,” says Stringer. “They don’t want someone to try and fix things all the time, but someone to just tell them, ‘I’m here for you.’”
