Rheumatoid arthritis is a chronic inflammatory disorder that causes pain and inflammation throughout the body, according to the Mayo Clinic. People with rheumatoid arthritis commonly have joint pain and stiffness, in addition to other symptoms like fevers and fatigue.
During a flare-up of symptoms, you may have trouble doing household chores or you might need special accommodations at work to feel more comfortable getting through the day. In either case, finding rheumatoid arthritis support can help. But how do you get the help that can make life just a little bit easier? SELF asked people with rheumatoid arthritis for their advice on how to find support that makes a difference at work, in their relationships, or just with daily life. Here’s what they shared.
1. Consider asking your loved ones for specific acts of service.
It can be really, really hard to ask for help with things, even when you really need it. Meredith Boyd, 45, who was diagnosed with juvenile rheumatoid arthritis when she was 15, tells SELF that she can relate to this feeling.
“I can be overconfident at times and often bite off more than I can manage because I want to please everyone, so I often struggle with asking for help or taking time for myself,” Boyd tells SELF.
If you feel you have a good level of trust with a family member or a friend, try talking to them about how you would like their support. Your friends and family may not fully understand what you’re going through or how they can help. It may be useful to think about how your symptoms affect the way you feel and your ability to perform certain tasks. Then you can come up with specific ideas for how they can help you carry out those activities. For example, if you usually cook but have a hard time chopping, then you might ask your partner to do this for you.
Shelley Decker, 45, found this approach beneficial when asking her family and friends for support. They were eager to assist Decker once they better understood her condition and what she wanted them to do.
It’s important to remember that asking for help is not a sign of weakness, says Amy Holly, a 46-year-old mother of two who was diagnosed with rheumatoid arthritis in 2007. In her experience loved ones say that helping her is one way they can express how much they care. “I find that it’s their way to say, ‘I love you.’ So, when you let people help you, you are really letting them say, ‘I love you,’” Holly tells SELF.
2. Find help with childcare if you can.
It can be super hard to balance your needs with your family's when you have young children. For Holly, hiring a babysitter to watch her children twice a week, when her support group wasn’t available, allowed her to nap during times that she was severely fatigued. Of course, not everyone has this kind of support available—it can be costly and out of many people’s budgets. “I was really fortunate to have the resources to do that,” Holly says. Friends or family members who have expressed their desires to help may be open to babysitting within your budget (or for free) so you have time to rest or practice other forms of self-care. If you think childcare will help and are comfortable with your kids being cared for by someone you don’t know, you may want to research lower-cost options at community centres in your area or check your local parenting Facebook groups for ideas.
3. Connect with other people who have rheumatoid arthritis.
Understandably, you may find that your best sources of support are those who truly know what you’re going through. Holly says that joining online support groups has been invaluable. “Those can really be a lifeboat,” Holly says. “Somebody definitely understands what you’re going through [in these groups]. They know it first-hand, and they can give you advice if you’re looking for it, or they can give you sympathy if you’re not looking for advice.” You can search “rheumatoid arthritis” in Facebook groups to find a few that appeal to you. You can also look for online support groups and resources through the Arthritis Foundation or Creaky Joints, an arthritis advocacy group.
Alternatively, Kim Kissell, who was diagnosed with rheumatoid arthritis in 2003, says she finds a lot of helpful lifestyle modifications from blogs and online communities made up of people with chronic conditions. For example, Kissell now uses a stool in the shower because it allows her to get clean without bending down—but she never would have thought about doing this until she found the tip online. You can find these by researching “arthritis groups” or “arthritis communities” on platforms like Google, Facebook, or Reddit.
4. Consider talking to your employer or supervisor about making job modifications.
Going to work may feel impossible when you’re in a lot of pain or dealing with other rheumatoid arthritis symptom flares. Sometimes you might need to make adjustments to your workspace in order to be more comfortable. These changes can be as simple as swapping out your desk chair for a more ergonomic version, or it might be asking for a dress code exemption. For example, Kissell is a teacher and her school dress code prohibits wearing sneakers. But Kissell says sneakers are the only type of shoe that allows her to stand comfortably all day, so she asked her principal for an exception (and it was granted).
Talking to your supervisor can feel really intimidating. If you have a good relationship with your boss, then you may want to consider having a discussion about how you can be more successful at work (as in Kissell’s case). Or you can talk to your human resources department if your company has one and you feel comfortable doing so. You might want to ask about your company’s policies, ask whether they need any documentation from your doctor, or whether they can provide you with ergonomic equipment.
5. Consider seeing a therapist or counsellor if you can.
Understandably, you may become depressed or anxious from living with chronic pain. Or some people may be ashamed about having a medical condition. Those feelings can all be incredibly overwhelming and hard to work through on your own. Talking to a therapist is one possible source of support that can help you process some of the feelings you’re currently experiencing. Carissa Strohecker Hannum, 29, is a psychotherapist who counsels people with chronic conditions and also has first-hand experience managing one herself. She was diagnosed with ankylosing spondylitis and rheumatoid arthritis when she was 15 months old.
“It’s a huge life stressor, and you really have to learn how to live with and work with your arthritis,” she tells SELF. “It’s important to not just target the pain but the emotions around it.”
If you’re interested in seeing a therapist, you may want to ask your doctor for referrals to clinicians who specialize in helping people with chronic conditions. If you have insurance, you can check your insurance provider’s website for counsellors in your area. Alternatively, you can browse OpenPath for therapists who offer reduced-fee services or look at Psychology Today for therapists in your area (some practitioners note whether or not they accept sliding-scale fees on their profile). To find the best fit, it may be beneficial to ask therapists you’re interested in working with about their experience counselling people who have similar experiences to yours.
6. Seek support in hobbies and activities too.
Some people we talked to said participating in certain activities felt like a method of support. Cheryl Crow, 33, an occupational therapist who was diagnosed with rheumatoid arthritis in 2003, says she worries that her rheumatoid arthritis medication might stop working or that she could suddenly develop a really serious side effect to it. When that happens, Crow turns to mindfulness meditation because it helps her focus on the present and calm down. There are many ways to practice this, but Crow traces an infinity sign on her leg while slowing her breathing and focusing on the feeling of her finger against her skin. “That’s been super helpful because it reduces the amount of stress I feel,” Crow tells SELF. (Here are more ways to meditate.)
Holly says making art has really helped her manage her condition. When she has some pain but is still able to move her hands, she likes to make collages or paint using watercolours. “I found that when I can concentrate on painting and creating, I don't feel pain as much,” Holly says.
It’s important to remember that needs are highly individual, and the rheumatoid arthritis support that’s best for you will be tailored to your specific habits, lifestyle, and preferences. And the support you need now might be different than what you needed a few years ago or will need a few years from now, so it’s good to re-evaluate where you’re at as things change. “Your needs might change a lot over the course of your life,” Crow says. Communicating your needs to others and being creative with how you find support can help you manage your condition over time.
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