When you have a chronic disease like arthritis, a big part of self-care is learning when to say no to plans or cancel at the last minute, so you give your body the R&R it needs to stay healthy. Maybe you’re fighting through a flare and can’t fathom the thought of getting off the couch. Or perhaps you have a vacation coming up and you know that resting preemptively always helps make traveling easier on your joints.
But it’s not easy when your heart wants to go yet your body is telling you to stay put. Having to skip certain social engagements is a big reason people in the CreakyJoints community say their diseases like ankylosing spondylitis affect their relationships or that psoriatic arthritis has taken a toll on their friendships.
“The reality is that most people with hidden illness are routinely put in a place where they have to defend themselves,” says therapist Jill Johnson Young, MSW, LCSW, of Central Counseling Services, who specializes in helping people living with chronic illness.
Crystal Gilroy of Brooksville, Florida knows this scenario all too well. Before she was diagnosed with rheumatoid arthritis, she told people she had other plans instead of telling them she was sick because some people would tell her the illness was all in her head. “When I was diagnosed I felt like I finally had something concrete to back up my reasons for staying home, but some people still didn’t understand even when I explained it to them,” says Gilroy.
We spoke to experts and people living invisible illness for their advice on how to manage your social life and maintain your relationships with family and friends.
First: Educate Others
If your leg were in a cast, it would be obvious why you had to cancel a night out with friends, but with inflammatory arthritis, the symptoms aren’t obvious. You know your pain is real, but others may not see it.
It may not be an easy conversation, but it is vital that you educate those around you. “If you get out in front with providing material about your illness, and how little control you have over when it shows up and how debilitating it is, friends tend to make allowances,” says Johnson Young.
This step wasn’t easy for Nicky Flores, a wellness accountability coach in Gillette, Wyoming, who has rheumatoid arthritis. “At first I felt shame. I didn’t want to tell people because I did not want pity or to be viewed differently. It also made me feel angry that I had to now explain something and grieving the life I once took for granted.”
Flores realized her friends and family needed to better understand her disease to have a social life. “Those around us need to have a basic understanding of our position, symptoms, and overall disease,” says Flores. “I’m not saying it must be a book that they understand, but the general idea that it is excessive joint and body pain, and me sometimes being really exhausted or wanting to fall asleep early and possible overall fatigue some days.”
For close friends, you might want to share with them materials from our site (like our Patient Guidelines), so people really can begin to understand the ins and outs of managing your disease.
Have an Elevator Speech
Don’t be caught off guard when well-meaning friends and family bombard you with questions or try to guilt you to attend a gathering. “Have firm boundaries regarding your need for support,” says therapist Alan Nelson, LPC, LMFT-A, SEP at Just Mind in Austin, Texas. “Try a narrative like this, ‘I know I look fine on the outside, but my joints hurt so much I can barely move. Sometimes I feel exhausted. This is a real medical condition, and I need your support.’”
Or take a lighter approach with this suggestion from Nelson: “Thank you so much for inviting me. I’m having a flare up today, so I need to take care of my health, but I really would like to be able to go next time. Please keep thinking of me.”
Rest, Don’t Quit
“As a paramedic, it comes naturally to me to always say yes, and to do things for others,” says Megan Wright, of Edmonton, Alberta, Canada. But Wright knew this hectic pace wasn’t healthy. Taking a fourteen-month leave from work after her initial diagnosis of rheumatoid arthritis was a wake-up call. “It was a steep learning curve,” she admits. “I had to learn the hard way that when I do not take care of myself and push myself for other people then it puts me out of commission for days to weeks, and that is not helpful to anyone. I learned that sometimes I need to say no today so that I can say yes tomorrow,” says Wright. Today, her philosophy is “rest, not quit.”
The tendency to overdo comes naturally for Todd Premo of Massena, New York. But he’s tuned into his body more and is more comfortable when he needs to say no. “Knowing my body gives me insight to when I am going to crash so that I will schedule activities accordingly,” says Premo, who has psoriatic arthritis.
Don’t Automatically Say No
When Wright wants to attend an outing but her body doesn’t, she still joins in. “I take it easy, leave early, or don’t partake in the activities,” says Wright. “For example, if my family is going bowling, I still go, but just relax and chat with everyone.” For a special occasion like her sister’s wedding, she paced herself until the big day. “On the actual day of the wedding, I pushed myself because I knew it was totally worth it. Then I planned for a couple of days of rest and recovery after.”
RSVP Without a Guarantee
How do you RSVP when you don’t know if you’ll feel up to attending? Candi DeVetten of Calgary in Canada knows her psoriatic arthritis may keep her at home, but she’s found a guilt-free way to respond by accepting an invitation like this: “I would love to come, but there is a chance I may have a high pain day. I will confirm with you the morning of if that is ok?” If the day arrives and she’s not feeling well, this makes it easier for her to say sorry. “I also make sure to make plans again with that person so they know I really do want to spend time with them,” she adds.
Talk to Yourself Like You Would a Friend
If you’re in pain or too tired to go out or be the host, give yourself permission to listen to your body and opt out. But that’s easier said than done, right? Johnson Young recommends a little self-talk. “Start by removing the words related to giving up, being a wimp, not trying hard enough, or not being a good sport,” says Johnson Young. Would you ever say that to a friend who was in your same shoes? Think about how supportive you’d be to that person and what you’d say to them, and talk to yourself the same way.
For example, you could try a version of this self-talk instead: “I’m going to listen to my pain and not push too hard. I’m hoping to take the stress off me. I know what I can do and what I can’t.”
Simplify Your Socializing
Christy Crowe of Tulsa, Oklahoma, manages her rheumatoid arthritis and social life by making adjustments to physically challenging activities. “For example, I may feel more up to doing something outside my home if someone else drives,” she says. “Or I may be willing to host a few friends in my home if others prepare food and the rest of the event.”
When in Doubt, Eat Out
Psoriatic arthritis doesn’t keep Jessica Brennan from Montclair, Virginia from enjoying a good meal with friends. Instead of cooking and hosting a dinner party, she makes a reservation. “I’d rather go out to a restaurant instead of cook because that takes a lot of pressure and anxiety and pain off my plate.”
Find Your Own Way to Participate
Kelsey Chomistek, of Calgary in Canada was just 14 when she was diagnosed with polyarticular juvenile idiopathic arthritis, which has similar symptoms as rheumatoid arthritis. Her friends participated in intramural sports and went to the gym, which is something she wanted to do but couldn’t — unless she made some modifications. “I try to spend time with my friends where I can, like going to the gym together, letting them run on the treadmill while I go on the bike and meeting them afterward to stretch, or I’ll go watch them play sports and join them for wings afterward.”
Stay Connected (Or Don’t)
The digital world we live in sure makes it easy to stay connected. Video chats and texting are ideal for staying connected. If you can’t go to an event you really wanted to attend, Nelson suggests enlisting the help of friend or family member to be your official texting buddy to cover the gathering to take pictures and text messages from friends.
But for some people, staying connected during the event could make you feel worse. DeVetten loves to see pictures and hear all the details, but not until the day after. “I try not to dwell on the guilt and sadness that comes with canceling. Instead, I look forward to the next plans I have with that person,” says DeVetten.
Have a Plan B You Feel Good About
“It always sucks having to miss out on plans,” says DeVetten. But she has a back-up plan that includes watching her favorites shows on TV, sweet treats, and kitty snuggles in a warm bed.
For Gilroy, who is also a mom of two boys, missing out is especially painful when it comes to the boys’ activities. Her husband and mom take plenty of pictures, and the boys will often bring back a special souvenir from their activity or outing. But that empty feeling doesn’t feel good, so she copes with a beloved hobby. “I love to paint because when I paint, it makes me forget about the pain and missing out. For at least a little while, I am free,” Gilroy says.
- 22 Self-Care Tips for Arthritis that Can Make All the Difference
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- 5 Things Everyone with Arthritis Can Do to Manage Depression