Having to cancel, change, or modify commitments or social events is an unfortunate reality of living with arthritis or chronic illness. You have to consider how you’re feeling and how well you’re functioning when making both long-and short-term plans — and it can be hard to predict when a flare will force you to stay home.
For Jen Douglas, PhD, licensed psychologist and Clinical Assistant Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, being diagnosed with rheumatoid arthritis at age 25 “changed everything, all of my plans,” she says. Around that time, Dr. Douglas had started dating the man who would become her husband and, like many people with rheumatic disease, they had to be flexible and plan around her symptoms, energy and pain levels, medical appointments, and treatments.
Physical symptoms during a flare-up — such as joint pain, muscle aches, fatigue, sleeping problems, headaches, loss of endurance and stamina, loss of mobility, and immune-system issues — are obvious reasons for canceling plans.
People with chronic illness are also more prone to mental health conditions like depression and anxiety, and just having a bad day can cause you to cancel plans, which then can cause even more depression and anxiety, says Sophia Tolliver, MD, Clinical Assistant Professor of Family Medicine and Vice Chair of Wellness at The Ohio State University Wexner Medical Center.
“Unfortunately, canceled plans are one of those common sacrifices made by [people] with chronic illness,” says Dr. Tolliver. Cancelling plans can make you feel left out, angry at others or yourself, sad, frustrated, lonely, guilty, isolated, and/or disappointed. These are all normal feelings — don’t beat yourself up for being upset — but do realize there are ways to deal with cancelled plans that may help you feel better and healthier, she says.
How to Cancel Plans Because of Arthritis or Chronic Illness
Whether you have to bow out of a happy hour or a trip across the country, cancelling usually isn’t as simple as not showing up. Taking appropriate and timely steps to cancel may feel like more work in the moment but it will help you and your loved ones understand what you’re going through. “Communicate, then communicate more,” says Dr. Douglas. “Get the other people involved early and often.”
Prepare a reason
You don’t owe anyone an explanation but it can help your friends, coworkers, or loved ones be more understanding and helpful. Decide in advance what you are willing to share; perhaps a short explanation of your illness and symptoms. This is particularly helpful if your illness is invisible or not well known. If you don’t want to get into details, it’s fine to say “I have a chronic health condition that is flaring up and won’t be able to make it. I’m so sad to miss it, let’s get together another time.”
Do it early
As soon as you know you need to cancel, let the other people know. This gives both you and them time to modify or change plans and space to deal with painful feelings. There may be times you have to cancel at the last minute and that’s okay, but don’t delay it because you’re worried about having a difficult conversation.
Be honest
Your instinct may be to hide your pain or other symptoms but being honest about what you’re going through can help others know how to help and can even strengthen your bond. If you tell people that you’re fine and it’s really not a big deal they may feel like you’re blowing them off.
“I think being open about [my illness and symptoms] from day one really helped [my now husband and I] get on the same page and feel like we were a team,” says Dr. Douglas.
Ask for help
Depending on the activity and the people involved, there may be ways to accommodate you without fully cancelling the plans and it’s okay to ask about those. For instance, changing the date or time, moving the location, modifying the activity, or asking for assistance (like a ride or wheelchair accessibility). You’re not “being a pain” by asking — your loved ones want to know how to include you.
Accept yours and others’ feelings without judgement
You may feel disappointed. Others may too. Those feelings are normal and valid. Trying to pretend that you’re not sad or making others feel like they shouldn’t be sad may create distance and more upset feelings. It’s honest and healing to say, “This really stinks! I can see you’re disappointed and I am too. I was so looking forward to doing this with you.”
Let go of guilt
Guilt is a very common reaction to cancelling plans but it’s important to remind yourself that this isn’t your fault. You are doing the best you can with your health and the resources you have at the moment.
Your illness isn’t a flaw or a failure — it just is, says Dr. Tolliver. “Release yourself from any expectation of what you ‘should’ be doing then reorganize your expectations to fit the current realities of a very draining medical condition,” she says.
What to Do When a Flare Forces You to Stay Home
Thinking positively and finding low-effort ways to care for yourself can turn a disappointment into a productive or peaceful time. Create a list of things you can do on short notice at home and enjoy. Here are some ideas to get you started.
Relax with ASMR
Autonomous sensory meridian response, or ASMR, is a long phrase to describe that pleasant-yet-strange tingly feeling some people get when listening to certain soft noises. “Nothing soothes me when I’m in pain better than ASMR, it feels like warm bubbly liquid flowing over me from head to toe, I even get goosebumps,” says Mollie C., 36, who has lupus and fibromyalgia.
“I turn on my favorite ASMR YouTube video and just lie there. It’s the best.”
It doesn’t work for everyone — some people just can’t feel it or are irritated by the noise — but those who love it, swear by it.
Have a slumber party for one
One of the best things you can do for yourself when you’re having a flare is to get adequate sleep, says Dr. Tolliver. Use your newly freed-up time to make your bed cozy and gather everything you’ll need to settle in. Do something quiet and give yourself permission to hit the hay early.
Try a digital get-together
If the pandemic taught us one thing about socializing, it’s how much fun you can have getting together virtually via Zoom, Skype, Hangouts, Netflix party, and the like. Ask loved ones if they’d be open to moving all or part of the activity online.
FaceTime in
If it’s not possible to make the plans virtual, you can still join in the fun, perhaps for part of the time at least. Ask a loved one to put you on FaceTime so you can say hi to people and see what’s happening. They can set you up in your own chair or even cast or stream you to a large TV so everyone can see you and talk to you together.
Have a stay-at-home kit
“I have a box of fun things I can do during a flare-up of my psoriatic arthritis and I only get it out then,” says Cora M., 30. This could include things like adult coloring books, special snacks, craft kits, a favorite movie, funny socks, fancy lotions, or a funny crossword puzzle book.
Stay off social media
FOMO — a fear of missing out, often sparked by seeing posts on social media — can hit people with chronic illness hard, says Dr. Tolliver. This is because you’re not just afraid of missing out, you know you are. Some people may enjoy seeing pictures or videos of what they’re missing but if seeing it makes you feel worse, it’s totally okay to steer clear of social media for a few days.
Light a candle and meditate
Meditation is powerful medicine, for your brain and your body, says Dr. Tolliver. It can help calm anxiety and soothe physical pain. Light a scented candle, dim the lights, and pick a type of meditation that you like. There are many guided meditation apps or vides online, some that deal with chronic illness specifically.
Watch a comedy special
Finding a way to laugh, especially about your illness, can be very powerful. “I always try and have a sense of humor about everything, including that. My favorite is to laugh really loudly, out loud,” says Jair Z., 22, who has recurrent leukemia. There are many streaming comedy specials online but people with chronic illness may appreciate those by Tig Notaro, a comedian who discusses illness often.
Read a fun book
An unexpected night in is the perfect time to catch up on books you’ve been meaning to read. “I love reading romance novels, they are my guilty pleasure, and they completely distract me from the pain,” says Seth A., 61, who has osteoarthritis and severe gout. “I also have a collection of those choose-your-own-adventure books. They are really fun too.”
Call a loved one
There’s no more powerful antidote to loneliness than hearing a loved one’s voice, says Dr. Douglas. Use your time at home to call your sibling, cousin, or friend from high school for an overdue catch-up chat.
Try a new recipe
Cooking can be a lot of fun when you’re not pressured for time. If your mobility allows, try making a new dessert or a recipe from a place you’ve always wanted to visit. While you wait, read up on the history of the dish.
Or try something comforting and familiar: “I always cook my mom’s matzo ball soup when I’m feeling bad, it reminds me of her and is very comforting,” says Shalom S., 50, who has chronic fatigue syndrome and chronic Lyme disease. Check out one of our episodes of CreakyKitchen, during which we cook and share recipes that are hand picked by people with chronic illness, expert nutritionists, and dieticians.
Organize a cabinet or closet
Sometimes practicality wins out. If you’re feeling up to it, a free evening is the perfect excuse to go through a section of your closet and get rid of all those clothes you don’t wear or to organize your medicine cabinet or one drawer in your kitchen to make sure your most-used cooking tools are accessible. It will keep you occupied and give you a sense of accomplishment.
Keep it small and limited — organization projects tend to explode — so that you don’t make your flare worse.
Write love notes
If you can’t be with loved ones, try writing, typing, or voice-dictating a note to them. Write from your heart or use a template like “10 Things I Like About You” or “My Favorite Memory of You” or “5 Reasons I’m Grateful for You.”
Make the letters as fancy as you like with doodles, stickers, or calligraphy. Mail or hand-deliver it when you’re feeling better.
Invite someone over
If your flare isn’t too extreme, consider inviting a friend over to hang out for a couple of hours, says Douglas. You may be too tired or in pain to go out to an event but a casual get-together in your home may feel more doable.
Take a hot bath
Anything that soothes your physical and mental symptoms is a win, says Dr. Tolliver. For many people, a hot bath fits that bill perfectly. Make it special and soothing by adding bath salts, lighting candles, and bringing a favorite magazine or book.
Exercise gently
Exercise may feel like the last thing you want to do when you’re flaring but gentle movement can increase your energy, improve your mood, and help relieve symptoms like pain and stiffness. “I have a favorite yoga teacher online and when I’m home I like to do one of her videos before bed,” says Nanette P., 67, who has rheumatoid arthritis. “It hurts when I start but by the time I’m done I’m always glad I did it.”
Listen to your body — and, remember, even gentle stretching or a five-minute walk counts. Get tips to stay motivated when you have no energy to exercise because of fatigue from chronic illness.
Work on a personal goal
“I’ve wanted to be a personal trainer for years but you have to take a course and then pass a test and I’ve just never found the time — until my chronic migraines became so bad I had to start staying home all the time,” says Amanda S., 40, who also has type 1 diabetes and chronic pain. Now she sees the cancelled plans as a gift because they allow her more time to study when she’s feeling okay. “I passed the test a week ago and finally got my certificate. It feels really good to have accomplished that.”
Paint or draw or make music
Doing something creative can get you into a “flow state” when you feel excited yet peaceful and productive yet calm. This is a powerful distraction from pain and negative feelings. “I compose music online and when I get in the zone, I can do it for hours and barely even notice the clock moving,” says Jeremy L., 45, who has a currently undiagnosed autoimmune disorder.
Journal your feelings
People with chronic illness are often told to journal their symptoms but it can be very helpful to journal your feelings as well, says Dr. Tolliver. Writing out how you feel about having to cancel plans can help you process all those complicated emotions. If you’re having a flare in your hands and can’t write, try typing or record your feelings using an app on your smartphone.
Plant an indoor garden
Growing and tending to plants is calming and fun. Plant some herbs, flowers, or even a small bonsai tree in pots and work on your garden when you have time at home.
“I’ve basically turned my front room into a greenhouse,” says Renata G., 43, who has fibromyalgia and arthritis in her back and neck. “Not sure my family appreciates it, but it makes me so happy to see all of that green, especially when I’m hurting. It’s become my happy place.”
Decorate something
“In my pre-sickness life, I was an interior decorator and I still love making things pretty,” says April Y., 36, who has an autoimmune thyroid disorder. This could be making something pretty to display, looking up decorating options online, drawing plans, or just dreaming about redoing a space.
Seek support
Talking with others in your same situation can be healing in a way nothing else is, says Dr. Tolliver. Thanks to the internet you can find online support groups or message boards for nearly every type of illness and situation. You can follow CreakyJoints on social media — Facebook, Instagram, Twitter, Tik Tok, YouTube — to connect with other patients who are seeking community for living with arthritis and other chronic illness.
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Interview with Jen Douglas, PhD, licensed psychologist and Clinical Assistant Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine.
Interview with Sophia Tolliver, MD, Clinical Assistant Professor of Family Medicine and Vice Chair of Wellness at The Ohio State University Wexner Medical Center.
