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. 

Be a More Proactive Patient with ArthritisPower 

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up. 

 

“Good quality of life” might seem like a throwaway phrase that doesn’t mean much of anything, or maybe you assume it refers to a standard of living you’ll never attain given your chronic illness. Neither of those things are true.  

Quality of life may be subjective, but it’s still incredibly important and worth discussing with your doctor. That’s because, broadly speaking, it’s really about making sure you’re mentally and physically well enough to do the things that you want to do.  

“Every patient has their own wants, desires, self-image, and ideas about what they want to accomplish in life,” says rheumatologist Joseph Huffstutter, MD, Partner with Arthritis Associates in Hixson, Tennessee. “I want patients to tell me about everything that’s going on with them so I can help them reach their goals. I don’t want your disease to define who you are.” 

Unfortunately, there are many misconceptions about what quality of life means and what you can do to improve it. Here, we aim to dispel a few of the most common myths and shed some clarity on how to live well in spite of your illness.

Myth: “Good quality of life” means you don’t have any symptoms 

Quality of life does not equal lack of symptoms. Rather, it’s a subjective measure of how well you’re functioning. It’s based on your own perception of how you’re doing, your goals, and your expectations, says Bonita Libman, MD, Chief of Rheumatology at the University of Vermont Medical Center. In other words, quality of life means how well you are actually faring as compared to how you think you should be doing.  

Take pain, for instance. “Some people have an expectation of having no pain at all,” says Dr. Libman. If that sounds like you, and you’re experiencing any physical discomfort, you might rate your quality of life as poor. Yet another person might find that their pain is manageable and doesn’t interfere with them doing whatever is most important to them.  

Quality of life is often an evolving concept, depending on where you are in your patient journey.  

“Before my symptoms of multiple sclerosis, ‘quality of life’ meant improving my financial, familial, and employment status,” says Wisconsin-based psychotherapist Shelley DeJongh, LPC. “When my symptoms of optic neuritis started and eventually led to my diagnosis of MS and other pain disorders, I fixated on my symptoms.”

Once DeJongh accepted the fact that she’d always have symptoms from multiple chronic illnesses, she reframed how she saw her role in the world: “My quality of life has been to honor all of my accomplishments as a psychotherapist, mother, wife, sister, daughter, and volunteer,” she says. “Those roles allow me to feel how purposeful my life has been. For me, that purpose is no longer trying to fix the symptoms or will them away. Instead, my intention is to live a quality life with the symptoms.”  

Myth: Quality of life is about only physical functioning

Good health, according to the World Health Organization (WHO), encompasses complete physical, mental, and social well-being. If you have a chronic disease, you might find that it impacts several of these domains. For example, research has shown that rheumatoid arthritis (RA) patients often deal with physical limitations (including disability and pain) and mental disorders (such as anxiety and depression). It’s also natural for the condition to impact how you function socially and in your career. 

“It can impact your energy level, your mobility, and your intimate relationships,” says Dr. Huffstutter. “There’s no aspect of your life it doesn’t touch.” 

And that’s exactly why there’s no one-size-fits-all solution for improving quality of life. If issues like pain or physical disability are what’s bothering you most, your rheumatologist might be able to make changes to your medication regimen, suggest supportive tools (like a cane or physical therapy), or even refer you for surgery. But you might also need help coping emotionally; in that case, working with a therapist who specializes in seeing people with chronic diseases might be beneficial. 

“My clients present with fear, sadness, doubt, shame, guilt, anger, helplessness, and anxiety,” says DeJongh. “I help my clients identify their emotions associated with their diagnosis through using acceptance and mindfulness strategies along with commitment and behavior-change strategies. My approach is to help my clients find hope and increase psychological flexibility around their long-term health challenges.” 

Myth: Everyone who reaches remission has a good quality of life 

If your C-reactive protein (a measure of inflammation) is low and you don’t have any tender or swollen joints, that’s certainly good news, but it doesn’t always correlate to great quality of life. “Disease activity is an objective measurement of how much inflammation is present, and we certainly have to take that into account,” says Dr. Libman. But since quality of life has to do with your personal assessment of how you’re doing, it may or may not correlate to your disease activity score. 

“Some people [in remission or with low disease activity] feel that whatever symptoms or limitations they have impact their quality of life significantly,” says Dr. Libman, noting that a patient might have developed permanent joint damage that will impact them indefinitely. Another person in remission might find that having to get regular medication infusions is substantially disruptive or distressing.  

On the other hand, someone with very active disease might feel their quality of life is pretty good. “It may sound odd,” she says, “but some people are not that bothered by their symptoms.”  

Myth: Your doctor doesn’t want to hear about quality of life 

When your doctor asks, “How are you?” they’re not just making polite conversation. They want to know whether you’re having trouble sleeping, are in too much pain to play your favorite sport, or are struggling to care for yourself or your family. These are the kinds of issues your provider needs to know about in order to help you improve and achieve your personal goals. 

To make sure you don’t forget something important or run out of time, make a list of any issues you want to discuss before you head to your checkup, advises Dr. Libman, who uses the RAPID3 index to assess patient’s quality of life at each visit and track it over time.  

This questionnaire is just one of several patient-reported outcome tools that your doctor might use. Some are general health surveys, whereas others focus on a singular condition, such as the Rheumatoid Arthritis Quality of Life questionnaire. (You can also keep track of your symptoms and help advance research by joining ArthritisPower, the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions.  

Some rheumatologists, such as Dr. Huffstutter, don’t use a formal survey but are still very invested in understanding how your condition is impacting you and your daily life. He and other providers may ask such questions as these, which assess how you’re doing with everyday activities and issues.  

• Can you dress yourself easily, including doing buttons?  
• Are you having any trouble walking, showering, or driving?
• Are you frequently having to turn down invitations with friends and family due to flares?
• How are you sleeping? 
• Are you struggling with anxiety or depression? 

A recent study, published in the journal ACR Open Rheumatology, found that 63 percent of RA patients have not discussed treatment goals with their provider. While your doctor should be broaching the subject, consider this a reminder that sometimes the onus may be on you to speak up — whether you’re prompted or not. 

“Many patients’ coping mechanism is to try to ignore symptoms as much as they can,” says Dr. Huffstutter. “I’m okay with that as long it doesn’t interfere with daily living — but when it does, I need to know about it.”  

Don’t wait — promise yourself today to address quality of life at your next rheumatology visit.  

Be a More Proactive Patient with ArthritisPower

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

It’s been another tough year coping with the pandemic, but here’s a bright side: “We can be grateful that we are survivors and warriors of both a chronic illness and a historic pandemic,” says patient advocate Judy N., who lives with rheumatoid arthritis and osteoarthritis. “COVID-19 made me realize how fortunate I am to have excellent doctors that help me live with a chronic illness. It refreshed my spirit of caring for myself and others.”

For Lesley W., who lives with ankylosing spondylitis (AS) and Crohn’s disease, 2021 was a testament of inner strength and resilience: “Oftentimes we search so hard to find the strongest person to whom we can look up to; but sometimes all we have do is look in the mirror to find the most strong and resilient soul: ourselves. Acknowledge your own strengths and how far you’ve come warrior.”

As the end of 2021 approaches, we asked patient advocates in the Global Health Living Foundation and CreakyJoints community to reflect on the ways this year helped shape their physical and mental health as well as their outlook on living with a chronic illness.

Read their insightful, beautiful, and relatable lessons below — and let them inspire you to reflect on this year and beyond.

Mental health and self-care matter more than ever

“2021 was a year that tested the mental health of humans around the globe due to the COVID-19 pandemic. It was a time for mourning the loss of far too many family, friends, and fellow citizens. I am a firm believer that there is no shame in seeking mental health counseling if needed. I am also blessed to be able to communicate with fellow patients around the world through social media which helped me through the worst of the year.” — Judy N., who lives with OA

“This year I started getting up one hour earlier than usual. I used to be the person who rolled out of bed and was out the door to work 20 minutes later. However, this year I found that for my mental health I needed to slow down. I needed quiet time in the morning before the rest of the family was up. I needed time to read and pray and stretch and not be distracted.  I have found that by getting up one hour earlier, I have a much better start to my day. I can fill my mind and body with deep breathes, light therapy, and positive thoughts and set the pace for the day.” — Laura J., who lives with RA

“Practicing self-care has always been a priority of mine, but in 2021, I made it even more of a priority. I learned to treat myself when I could. That could mean picking up a favorite meal, relaxing in the tub, chatting with friends, or doing crosswords. It was something just for me to relax and recharge and even reward at times.” — Eddie A., who lives with psoriatic arthritis (PsA)

“I realized this year that I had to start doing more self-care. I started going back to my hair stylist with more frequency; I’m taking time to myself; and I’m weeding out things that no longer serve my purpose. I’m focusing on me and what I want.” — Ashley K., who lives with PsA, Raynaud’s disease, polycystic ovary syndrome, and mixed connective tissue disease

“I’ve learned that self-care means prioritizing yourself for your own health. As someone who always puts others before themselves, learning to prioritize my own health has changed how I approach health and wellness.” — Kelsey F., who lives with migraine

“I have learned to be more discerning of what is deserving of my time, and what isn’t regarding my personal life, career goals, relationships, and social media. To pay attention and focus on the things that are the most important. When we overcommit and fill our schedules up to the brim, it doesn’t allow us the time and space needed to heal. I feel that even last year, the pause that we all experienced collectively was a huge blessing in disguise. When you live with a chronic illness it’s important to pause regularly. To take time away and be alone, or around those who are supportive of you.” — Effie K., who lives with RA

“This year I realized I needed to focus more on myself and enjoying a good quality of life because there is so much unknown of what the future holds. I decided to take better care of my health and enjoy the good days when I am not in pain.” — Denise S., who lives with RA

“I’ve learned that my wellness needed to take a giant step ahead of a lot of other things on my priority list.” — Andy P., who lives with RA

“This year I tried to be much more mindful about overextending myself, especially with work. I had been in what felt like a never-ending flare, and continually running myself down was not helping. It is important to recognize the major role stress can play in our illnesses. Reducing my stress and increasing my rest days allowed me to take better control of my health.” — Meaghan Q., who lives with PsA

“The lesson I’m learning is that’s it’s okay for me to take a break from being on a crazy-ass hamster wheel of navigating the health system. It’s okay for me to just… rest.” — Melody M., who lives with small fiber sensory neuropathy and fibromyalgia

“I started eating more fruit and vegetables. I realize that controlling my weight and light exercise has helped ease my knee joint pain.” — Francisca G., who lives with RA

“Staying active is important. I experienced less pain by making sure I did stretches and worked out at home whenever possible.” — Patricia M., who lives with RA

“I felt very depressed [this year] because as an artist I need to use my hands for my craft, and I’ve had to slow down because I have days that the pain is very strong. I have learned to take a break on days when I don’t feel well. I will not push myself. When I do paint, I use it as an escape and relaxation.” — Mario M., who lives with RA

Saying no is a saving grace

“I learned the pandemic will manage you if you don’t manage yourself. Over the past two years, I have had to explain why I can’t go out places to people who would ask me to hang out. It eerily reminded me of the beginning years of my diagnosis, where I found myself explaining. But this just further reinforced the lesson I learned over a decade ago: that it’s okay to say no. It’s okay to make yourself, your health, and safety a priority.” — Effie K.

“I was always the ‘yes-girl,’ which was predisposing me to burnout, which was bad for my health and resulted in flare-ups and mental stress. I learned it’s okay to say no. It’s okay to have time to yourself. I realized I cannot give to others what I don’t have myself. — Raven M., who lives with RA

“This past year has taught me many things, but perhaps none have impacted me as deeply as being honest about my limitations. To acknowledge my limitations both physical and mental/emotional, and even more so to become at peace about them, has been a huge step for me in 2021. It’s been very liberating. Due to my limitations, I’ve learned to say ‘no’ when I really want to say ‘yes.’ I’ve chosen loneliness when I’d rather go out shopping or to dinner with friends. And I’m comfortable now sharing the reasons why.” — Elisa C., who lives with Sjögren’s syndrome and RA

It’s okay to do whatever makes you feel safe

“It’s important to keep up social distancing and hand-washing because there are different variants that can develop so we shouldn’t take the risk.” — Wigna C., who lives with RA

“I still wear a mask even when I walk around my block. I don’t know who I will pass on the sidewalk. I’m immunocompromised. To some, that may be a bit much. But do I care what others think? No. I have gotten looks, but then I would see someone else wear a mask; typically, an elderly person or someone else who understands. I have missed events before this pandemic rolled around, so I feel that dealing with that isolation back then when it wasn’t the norm, made me stronger to handle this whole situation overall.” — Effie K.

Communicating well with your doctor is more important than ever

“I had to navigate insurance changes, taking medication around vaccines, doing telehealth appointments, and just dealing with my disease. Throughout it all I kept my doctor in the loop. …Not seeing him in person for over a year presented an entirely new challenge: How do you explain pain and skin involvement over an internet connection? You have to describe it well and be creative with the camera. But the main thing is to make sure you get your point across. If they don’t listen, ask/tell again.” — Eddie A.

“Although I do prefer in-person appointments for many things, I have come to enjoy the ease of telephone or video appointments and I love being able to do those from the comfort of my home and reduce my exposure to illness. I now keep a notes app on my phone with a running tab of questions or concerns that I want to bring up at my next doctor’s appointment. I take photos of flares so that I can show them at my appointment, if need be, to help the doctor have an overall picture of my symptoms.” — Laura J., who lives with RA

“Telehealth visits have been the best thing to come out of this for me. My rheumatologist is a 90-minute drive each direction so being able to log on and speak to him has been incredible. And he runs on time. I also have time to take notes in my phone and bring up topics I was wondering about.” — Chantelle M., who lives with RA

“I have learned to talk to my care team about my mental health struggles. Art therapy has made a big impact on my life. I have connected with my creative side and am learning to express my feelings.” — Iman R., who lives with chronic migraine, postural orthostatic tachycardia syndrome, and myalgic encephalomyelitis/chronic fatigue syndrome

We’re all in this together, and together we are stronger

“I’ve learned that dependence upon others creates a unique opportunity to learn some deep lessons about serving, empathy, and compassion. Sometimes I’m the student and sometimes I’m the classroom in which other people learn these things. And I’m okay with it now.” — Elisa C.

“I’ve learned that support is vital for me. I try to be as honest as I can be about what I’m going through and never sugarcoat how I’m feeling. I ask for help when I need it — despite wanting to do things on my own. Sometimes you need help, and there’s no shame in asking for it.” — Steff D., who lives with ankylosing spondylitis

“I joined a help group for adults my age that are from my country in Peru. We connect via Zoom and share stories. We sing, dance, and talk about life issues, which has helped with increased anxiety and feelings of isolation since COVID.” — Zucy A., who lives with RA

“This year my anxiety was very high because of COVID. The isolation of staying home made me focus on my pain and the fact that my hands were starting to stiffen and disform. Being part of [CreakyJoints’] patient leader group has given me a way to share my experience with others, so I do not feel alone.” — Teresa H., who lives with RA

“Find your community. Hold onto it and nurture it. Internet friendships are true friendships and I wouldn’t have survived this pandemic or my new RA diagnosis without the people and support I found online. And not only that, you don’t have to waste spoons getting dressed or traveling to see them. They are always there.” — Alexis M., who lives with RA

“I was blessed in 2020 to continue to connect with fellow patients from around the world via social media, in particular a group page called CreakyJoints Patient Advocates on Facebook. We have all learned so much from each other and from the awesome articles written and shared by patients and the staff of the Global Healthy Living Foundation. We are all in this together, and together we are stronger.” — Judy N.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Illustrator Delilah Blue Flynn and graphic designer and knitter Magdalena Truchan were chatting over a glass of wine last April and wondered: Why aren’t women with disabilities part of the body positivity movement? And why don’t we see a lot of interesting and modern representation of disabled people in art?

Magda, who became paralyzed from the hips down at age 24 after a car accident, wished women with disabilities could be portrayed as sexually desirable and stylish, much like mid-20th century pin-ups.

“Disability can make you hide, and why not get dressed up and feel sexy about yourself?” she says. “People love confidence. If you’re not wallowing in your disability, you can go far.”

Delilah, inspired by retro pin-up artists like Gil Elvgren and Alberto Vargas, as well as Magda’s very own “pin-up mixed with punk rock” style walked away from that conversation with an idea. “This is something I can do,” she says. “I can make my friend really happy and turn her into her own piece of pin-up art.”

A few days later, she surprised Magda with a one-of-a-kind illustration (pictured above), portraying Magda in all her glory: as a modern-day pin-up on wheels. The gift not only made Magda almost cry but sparked an emotional reaction among friends and family after she shared it on social media. “People freaked; no one had seen anything like this before,” says Magda.

Sharing Their Art – and Changing Beauty Standards

The friends immediately recognized the powerful and personal message behind this artwork and took the idea to a friend on the board of GARNER Arts Center in Garnerville, New York, where Magda volunteers. They booked a date and began to work on an exhibit series meant to shatter ableist standards of beauty.

For Magda, getting dressed, doing her hair and make-up, staying active and social, and giving back to her community is what keeps her going. “I wake up some days and say, ‘This fucking sucks and I want to stay in bed,’ but then I’m like ‘nope’ and I get up,” she says. “I find that helping people is uplifting and the universe gives you something back in return.”

Both Magda and Delilah say they hope their exhibit “On Pins and Needles: Accessible Burlesque & the Art of Adornment” helps people with and without disabilities realize that there are stylish, fun, interesting, and sexy people who just happen to be disabled.

The exhibit includes 22 illustrations from Delilah (ink and marker on paper, 13 x 19-inch) that showcase female characters with a broad spectrum of disabilities, including anxiety, autism, amputee, ADHD, blindness, cerebral palsy, depression, dwarfism, and rheumatoid arthritis.

“I wanted to show a diverse array of disabilities so there was a representation of both physical and mental health disabilities,” says Delilah, who has anxiety and ADHD. They also feature women of different races and ethnicity, shapes, and sizes.

“It is important to celebrate disability and showcase the multifaceted nature of people with both invisible and visible disabilities,” says Joseph M. Coe, MPA, Director of Education and Digital Strategy for the Global Healthy Living Foundation (GHLF), which is sponsoring the event. “This exhibit provides a space to explore sexuality and sensuality while dispelling beauty myths that negatively impact people who don’t fit neatly into society’s ‘beauty standard.’”

The exhibit will also incorporate Magda’s one-of-a-kind stylish knitted wraps well-suited for people with limited mobility. Magda’s 10 wraps will be display on hand painted, full-size mannequins designed by local artists.

“I love how you can take yarn and create an outfit out of it,” says Magda, who says that knitting is a form of meditation for her. “There are so many shawls that are generic and basic, and I wanted something of designer quality for people who are disabled.”

The exhibit will take place every Saturday from December 18, 2021, through February 5, 2022, at the GARNER Arts Center. It will be closed Christmas and New Year’s Day. The illustrations and wraps will be sold on the GARNER Art Center website.

Become a Patient Advocate

Want to fight for policies to address health disparities and equitable health care? The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation. It is composed of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more equitable, affordable, and accessible, learn more here.

Receiving and giving help are basic human needs and behaviors. But somehow asking for help that is related to your chronic illness isn’t easy. It sounds like it should be straightforward: You need help and your loved ones want to help you — so why is it so tough to reach out and ask for it?  

It starts young. “Many of us are trained from birth not to ask for help, to not be a burden on others, and it’s hard to overcome that cultural conditioning,” says Laurie J. Ferguson, PhD, a licensed clinical psychologist specializing in chronic illness, certified coach, and ordained minister. Dr. Ferguson is the Director of Education Development at the nonprofit Global Healthy Living Foundation (GHLF). 

But even if you can get past those outside expectations that no one should ever need help and everyone will be perfectly healthy and capable their entire lives (seriously, where did that even start?!), you may be held back by internal feelings of inadequacy, vulnerability, and even fear, says neuropsychologist Sanam Hafeez, PsyD, Director of Comprehend the Mind, a diagnostic and treatment center for neuropsychological, psychiatric, and educational difficulties. Dr. Hafeez is a faculty member of Columbia University in New York City.  

“I spent a long time trying really hard not to ask for help when I needed it. As I have gotten older (35 years with RA!) I realize it’s really ok to admit you need a hand (or at least a hand that doesn’t hurt!) sometimes,” tweeted CreakyJoints member Laura T.  

Chronic Illness and Asking for Help: Why It’s Hard

Asking for help can feel tricky even under the best of circumstances but having a chronic illness adds another layer of difficulty. Having to ask for help can add to existing feelings of being vulnerable, exposed, weak, or out of control. 

“You may resist help, feeling that you don’t want things to change and want to remain in control of your life as much as possible,” explains Dr. Hafeez. “Or perhaps you are afraid to share the reality of your illness, whether it’s because you’re in denial about how bad things have gotten or you don’t want your loved ones to worry.” 

There are some common reasons that people with chronic illnesses may think twice before asking for help, according to our experts. Understanding these reasons can help you feel less alone and learn how to overcome your hesitations.  

Note: While these are all normal and understandable reasons, if you find yourself overwhelmed to the point where you are unable to ask for help you may benefit from therapy to help you normalize your feelings and experiences. 

• Mental health issues: It’s common for people with chronic diseases to also have mental health conditions, particularly depression or anxiety. These, in turn, often make people isolate and turn away from loved ones.
• Uncertainty: Should you ask for help now, or wait until things get really bad? “Unlike with an acute illness, you don’t know whether or not you’ll feel better anytime soon, and this uncertainty about the future can change when and how you ask for help,” says Dr. Hafeez. “You may worry about burning out your caregivers or taking advantage because you aren’t ‘bad enough’ yet.”   
• Guilt: Chronic illnesses can lead to a lot of guilt — guilt over missing important functions, not being able to work and bring in income, being unable to be the parent, partner, or friend you want to be, financial strain, and on and on. When you already feel guilty or ashamed, you may be less likely to ask for help because you feel like you don’t “deserve” it.  
• Stress: Doctor visits, financial worries, dietary concerns, changes in family dynamics, physical pain, medication management, new symptoms — chronic disease can add stress to your life in a wide variety of ways. This can create a vicious cycle, leading to anger, frustration, and feelings of helplessness or hopelessness. Stress can make it feel extra hard to ask for help. 
• Practicality: There’s a lot involved in asking for help. You have to figure out what you need, contact people, coordinate schedules, express gratitude, and adjust for changes. All of these extra tasks when you’re already feeling overwhelmed can make asking for help feel like work.   

Before You Ask a Loved One for Help

If you’re reading this, it may be because you know you need to be better about asking for help, but you’re not sure how to go about it. There are things you can do to make the process simpler, easier, and more successful for both you and your loved ones. Here’s what our experts recommend you consider if you’re struggling with how to ask others for help. 

Know what you need

Being clear and specific about how your loved ones can help is essential. Make a list of tasks that you need aid with and prioritize them in order of importance to you. This may include:  

• Attending doctor’s visits 
• Childcare 
• Cleaning 
• Cooking 
• Driving 
• Grocery shopping 
• Providing a sympathetic listening ear  
• Running errands 

Get prepared 

The more information you have about what you need, the better people will be able to help you. Take a few minutes and gather the relevant information, like phone numbers for your doctor and pharmacy, dietary restrictions and preferences, adaptive equipment you need, medical records, and anything else that can help your caregivers.  

Consider the unique strengths of those who offer help

Next, make a list of people who have offered to help you. (Put everyone on the list even if it’s not someone you feel particularly close to. If they made the offer, assume it is sincere.) Think about their availability, skills, and constraints — and see how that fits with your list of needs.

Create a schedule 

Filling in a rough calendar of what help you need (and when) will help you better communicate your needs and answer any questions that your loved ones may have. This will save you time and energy in the long run.  

Prioritize the relationship 

Asking for help can change the dynamic of your relationships and it’s important to be mindful of your loved ones and their place in your life. For instance, it’s great to ask your partner for help but you may need to make sure you keep romantic aspects of your relationship strong. Similarly, asking children to help in age-appropriate ways can be good for both of you, as long as you put the parent-child bond first. (See below for our expert’s tips for asking kids for help while still being the parent.)

Go easy on yourself 

There may be times when you’re so sick or overwhelmed that you just don’t know what you need. It’s okay to simply say that — your loved ones will understand. Having a chronic illness makes everything harder, including asking for help, so be patient with yourself during the process.

Tips for Asking Adult Loved Ones for Help

Now that you’re ready to make the request, here are some tips from our experts and from people with chronic illnesses on how to ask for the help you need without exhausting yourself or feeling like a burden. 

Be honest about how you are feeling

Hiding the seriousness of your condition or the severity of your pain or disability makes it much harder for people to give you the help you need. Be honest and clear and don’t expect them to read your mind or figure it out based on your symptoms.  

It can feel very vulnerable to open-up to your loved ones in this way but it’s necessary, says Megan H. 45, who has postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos, and inflammatory arthritis. “I have learned that I can’t assume that people know how I feel,” she says, “I have to share that with them.” 

Make requests specific

Define the task you need help with, when you need the help, and about how much time you expect it to take. Example: “I’m looking for someone to drive me to my specialist’s appointment in San Jose, at 2 p.m. on Monday. I’d love it if you could wait with me and bring me home as well. It should take about two hours total.”  

Decide what feels comfortable to share

People like to know why they are helping — especially if your illness is “invisible” — but they don’t need to know all the details of your illness. Decide what you are and are not comfortable sharing with others about your health so that they feel like they are being kept in the loop but you don’t feel exposed. Example: “I’m having surgery on my back Friday. It’s to help fix complications of my arthritis and should help reduce my pain. I’d really appreciate a meal or two over the weekend since I won’t be able to stand to cook.”

 Educate them about your symptoms

“I have taught my family and friends to be on alert for telltale signs I need help,” says Megan H., including acting stroke-like, sounding drunk, not moving much, appearing like a wilting flower, or moving very slowly and/or unsteadily. “These symptoms are easily treated with salt, electrolytes, and rest,” she says. “I’d much rather they do this before anyone feels like they need to call 911.” 

Spread the love 

Resist the urge to only reach out to your partner or a select few loved ones for help. Having a larger support group prevents caregiver burnout and allows you to spend time with lots of people who care about you. If you have a smaller inner circle, it’s okay to reach out to the same few people repeatedly — as long as you keep open communication with them about their needs.  

Reach out to support networks

Look beyond your immediate circle for others who can help through volunteer networks. Religious, community, online, or illness-specific support groups can be a valuable source of help and comfort. They may even be better equipped to help with a specific need than, say, your partner.  

Share the work

Sometimes you may not need someone to do a whole task for you but rather just a little help or company while you do your tasks. “I get the most help from the friends that are willing to just be with me in mundane daily things like going to the grocery store or tidying the house,” says Ame P., 28, of Mississippi, who has fibromyalgia and chronic mental illness. “They don’t even have to do the work. It just helps to have them there to talk to while I do it. [It] takes me out of my own head. They are also amazing listeners and know to ask if I want advice or just an ear.” 

Express gratitude 

Whether it’s the first time your cousin brings you dinner or the 10th, be sure to thank them. “I deal with feeling like a burden all the time, but I also show appreciation and gratitude to those who help me,” writes CreakyJoints member April D. on Instagram. 

Thank-you cards, small gifts, or returning a favor aren’t necessary every time someone helps, but they are a nice gesture sometimes. Example: “You are so wonderful to make dinner and clean up the kitchen when I’m having a painful flare-up. I’m so grateful for you and I’d love to take you out for ice cream when I’m feeling better.”   

Give them space to reply

Many people freeze when put on the spot with a request. If possible, write your request in a text or an email. This gives them time to think about it before answering. If you’re speaking to them over the phone or in person, give them some time to answer. Example: “It would be great if you would be able to watch my baby for a few hours on Saturday. Feel free to check your schedule and get back to me.”  

Give yourself a pep talk

It’s understandable to feel nervous or anxious before asking someone for help. One way to overcome these feelings is to give yourself a little pep talk first. “I tell myself, ‘You can do it! You have done much harder things than this!’,” says Valentin U., 50, of Moldova, who has chronic pain and knee problems.  

CreakyJoints member J. Paschenfoy told us on Instagram that she tries to consider it “from the perspective of my loved ones. If they were suffering physically, and just needed a little bit of help, wouldn’t I be absolutely more than willing to help them? Of course!” 

Take people at their word

Avoid saying (or thinking) things like “Are you really sure you want to help?” or “You probably are too busy.” These phrases can make your loved one feel guilty and like they need to convince you. Instead, believe people when they say they want to help. Example: “Thank you so much for offering to do my grocery shopping! That will be such a great help to me.”  

Have a script

Not sure what to say in the moment or worried that you’ll forget something important? Coming up with a script is something that really helps Lizzy V., 43, of South Carolina. She struggles with hearing loss, chronic depression, chronic pain and fatigue, and short-term memory loss. You can write it down, save it in your notes on your phone, or even create an email template so you can just fill in the blanks.  

Be flexible 

If your particular need is flexible, offer your loved one some options to make it easier on their schedules. Example: “If you wouldn’t mind picking up my medication for me, that would be great! I just need it before Wednesday.”  

Ask people to check on you 

If you worry about reaching out for help too often or you aren’t sure what you need, you can ask your loved ones to check in with you periodically via a quick text or call. The message will give you a pick-me-up, an opportunity to connect, and a chance to ask for help. “My friends do daily check-ins with funny pictures of gifs when they know I’m in a down period,” Ame P. says. “Then I know they are there if I need them.”  

Be okay with a “no”

Your loved ones want to help you but if they can’t for some reason, it doesn’t mean they don’t love you. Respect their answer and be grateful even if this time they can’t help you out.  

Know how to say “no”

There are times when someone will offer to help in a way that actually isn’t helpful to you. It’s perfectly okay to tell them no thanks. You may offer an alternative if you feel like their intentions are good. Example: “I really appreciate the offer of sending me pizza but that food can cause my pain to flare-up even more. But I’d love company if you’d like to come over and hang out.”  

Set boundaries

Caregiving can make for blurry boundaries, particularly between loved ones. Avoid hurt feelings and conflict by making clear boundaries. Accepting help from someone doesn’t mean you have to accept other things from them or tolerate abuse. 

Consider safety issues

If your illness impedes you to the point where doing certain things like cooking or driving are dangerous, then it’s absolutely time to call for help. Then it’s not just about you, it’s about keeping everyone safe, says Megan H. “For instance, I have no problem asking for rides as it keeps everyone on the road safer than if I try to drive,” she says.  

Asking Children for Help

Your first instinct may be to avoid ever asking your kids to help but if you have a chronic illness, usually everyone in the house needs to be a helper. And that’s not a bad thing. Children are natural helpers and often enjoy the extra time with you. What an adult may see as a burden, a child may see as a fun experience.

“Asking children to help you teaches them compassion, teamwork, and life skills,” says Dr. Ferguson. “It can be a very loving and empowering experience, bringing you closer together.” Asking kids for help is different than asking adult loved ones. Here are tips from our experts on how to ask your children for help. 

• Keep it age-appropriate: Know what tasks are appropriate for your kids’ ages and stages of life. For instance, a 3-year-old may enjoy matching socks while you fold laundry; a 10-year-old may be able to take over caring for the house plants; a 13-year-old may like to play chef and cook a meal; and a 16-year-old may like to practice their driving skills while running errands for you.  
• Make it fun: For little kids almost anything can be a game. Make a chore fun by “game-ifying” it. You can create silly rules, sing a song, have a fun reward afterward, or make a video of it. Example: Picking up toys can become a pirate scavenger hunt. 
• Use it as a teaching experience: Asking for help is a great opportunity to teach children life skills like cooking, cleaning, childcare, and finances. Take the time to teach them in an age-appropriate way how to do each thing. Even if you can’t do all of it with them, be present and helpful.  
• Balance caregiving with fun: Your illness will change how you parent but it doesn’t change the fact that you are the parent. Even children who may have to help out more at home than their peers with healthier parents still need to feel and act like kids. Give them opportunities to help but make sure you’re balancing it with fun times. 
• Look for signs they are overwhelmed: Kids show stress in different ways than adults so be on the lookout for signs that they may be overwhelmed with helping, including trouble sleeping or eating, doing poorly or acting out in school, fits of anger or unexplained crying, regression in developmental milestones (like potty training, or expressing depression or anxiety.

Tips for Asking for Help When You Live Alone

Having live-in help via a partner, children, or roommates can make asking for help more convenient but what if you live on your own? “In this case it’s even more important to reach out to others for help, so you don’t become isolated,” says Dr. Ferguson. Most of the tips listed above are useful regardless of your living situation but here are some extra tips from our experts for asking for help when you’re solo. 

Ask to be invited to social events

Isolation can be a disease all on its own, causing health problems and worsening existing issues. Humans are made to be social and it’s important to include social time on your list of needs.  

It may feel scary at first to ask to be invited to things, but people may assume that your illness means you can’t or don’t want to hang out. Show that you are interested in joining game nights or going to dinner or the movies. Be clear about what your needs are, and let your friends know how to help.  

Have a list of emergency contacts 

Find people close to you in proximity and close to you emotionally that you can call when you need help. Keep the list stored on your phone — you can create a separate “helpers” list in your contacts — and print it out. Fill out the emergency or ICE contact on your phone in case someone, like an emergency worker, needs to ask for help for you. 

Make friends with your neighbors

Make a plate of cookies and/or write a nice note introducing yourself to your neighbors. It’s worth the time and effort to connect with those who live nearby and maintain those relationships. Some people may not be interested but many will appreciate the gesture. Give them a simple heads up about your illness so if you need help in the future, it won’t be a surprise.  

Ask loved ones to check on you regularly

Whether it’s a quick good-morning text or a weekly visit, having regularly scheduled check-ins with loved ones can be reassuring to both you and them. Set a protocol for what they should do if you don’t reply within a certain time frame or if you don’t answer the door.  

Give loved ones a spare key

Give a couple of trusted loved ones a spare key to your home or your garage code. This way they can come inside to check on you if you are unable to answer the door. They can also use it to pick things up for you, feed pets, or water plants when you’re not home. 

When to Seek Professional Help

Loved ones can do a lot of things to help out but they can’t do everything. If you find yourself in a physical or emotional emergency, you need to seek professional help.

• Signs to look out for include: 
• Self-harming 
• Suicidal ideations 
• Uncontrollable pain 
• Inability to feel joy or happiness 
• Loss of interest in hobbies 
• Isolation  

Also, remember that asking for help is a learned skill and it can be extremely difficult for some people. Talking to a therapist trained in chronic illness care is a great way to work through your worries and practice talking about what you need. 

Be a More Proactive Patient with ArthritisPower

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up.

In 2016, Michael Kuluva made his fourth appearance at New York Fashion Week. For designers, this weeklong event is an opportunity to put your mark on the world of design; to cement yourself as a name that people want to wear. But for Michael, a former professional figure skater who created and runs the fashion sportswear brand Tumbler & Tipsy, that year was also a chance to raise awareness for rheumatoid arthritis (RA), an inflammatory condition that causes debilitating joint pain and stiffness, fatigue, and other symptoms.

At that year’s show, Michael announced that he had been diagnosed with RA and shared what it’s like to be a young person living with a chronic illness — specifically, a young person whose livelihood requires hand strength and mobility, both of which are often impacted by rheumatoid arthritis.

Michael has continued to use the event as an opportunity to raise awareness for rheumatoid arthritis and the broader chronic illness community. CreakyJoints and the Global Healthy Living Foundation have supported Michael’s shows every year too.

Now, as Michael prepares for his tenth New York Fashion Week show, one has to wonder how he continues to seamlessly merge fashion and chronic disease patient advocacy. But this year’s show — held virtually for the second year in a row because of the COVID-19 pandemic — may be his most inclusive yet. Members of the chronic illness community have been involved in multiple aspects of the show, from  designing to modeling. Michael has also expanded his advocacy to include migraine awareness.

Highlighting a New Chronic Illness

For the first time in ten years, Michael is using his platform to raise awareness for another chronic condition: migraine. This is especially meaningful to Michael, as it is a condition that impacts his mother.

“I remember my mom suffering migraine attacks when I was a child,” says Michael, recalling the hours (and sometimes days) she spent shutting out the light and noise to feel some relief. “I don’t want people losing that precious time, especially with their family. If we can bring migraine awareness and relief of any type, that’s important.”

Michael found a way to do both by designing a pair of sunglasses, which will be on sale for a limited time on the Tumbler & Tipsy website.

“When I think of migraine, I think about wanting darkness,” Michael says of his decision to design sunglasses for the cause. He “kept the lenses really dark” to add to the functionality of the accessory, which earned his mother’s approval.

Bright lights are a well-known migraine trigger, and many migraine patients rely on sunglasses and other types of eyewear to minimize their exposure.

Incorporating Patient Models (and Their Needs) Into the Collection

One of the challenges faced by people with invisible illnesses like rheumatoid arthritis is being and feeling seen. Because of this, Michael has always prioritized hiring people with invisible chronic illnesses to model his collections. But this year’s show features 12 patients — the most in any of Michael’s shows. The patient models come from all over the world and live with many different types of chronic conditions. Some of the models include Kelly Boyd, a patient advocate in New Jersey living with RA who uses a wheelchair for mobility (and has previously modeled in Michael’s show in 2019); Jaime Sanders, a patient advocate from Virginia who lives with migraine; Naomi Creek, the national coordinator of CreakyJoints Australia and a person living with RA; and Alice Jones, a patient advocate from New Zealand who has ankylosing spondylitis.

Because many of his models live with painful chronic conditions, Michael ensures that every item he creates is functional as well as fashionable.

“This year’s collection is very flowing,” says Michael. “I wanted everyone to be able to get in and out of the clothes with ease. Not one person mentioned not being able to zip or button an item.”

Michael also wanted to drive home arthritis and migraine awareness with colors: royal blue for arthritis awareness and purple for migraine awareness.

“There have always been some colors here and there, but this year they are the predominant colors and the only ones in the entire collection,” says Michael, adding that they are accompanied by accents of black and white.

What’s even more impressive: Michael hand-dyed all the garments himself. This is no small task, especially for someone whose hand mobility can be impacted by RA. Fortunately, Michael learned a lot about timing and tending to his RA last year, when he had to hand-sew and hand-paint every item as a result of the COVID-19 pandemic and being in lockdown when he was creating his collection.

“It took a lot of time, and came together very slowly, but it looks amazing,” says Michael.

Collaborating with Patients on Designs

Adding to the list of fashion show firsts, Michael worked with fellow rheumatoid arthritis patient Eileen Davidson to design three T-shirts for the collection. The collaboration came about organically, as both have been fans of each other for quite some time.

“I’ve been following Eileen on social media for years and have always thought she has such a cool attitude,” says Michael.

One day, Eileen wrote on Twitter about wanting to design rock ‘n roll shirts again — a hobby and esthetic that dominated her life before her arthritis diagnosis.

Michael reached out to Eileen, who will also be modeling in this year’s show, and the two decided to co-design a shirt to raise arthritis awareness. The shirts, which vary in design and color, all feature the phrase “Fiercely Fighting Rheumatoid Arthritis.”

Learn more about the story behind Eileen’s T-shirt design.

The T-shirts will be available to purchase on the Tumbler & Tipsy website.

Continuing to Showcase Virtually

Last year, due to the global pandemic, Michael and many other designers showcased their collections through virtual shows. New York Fashion Week will be in person this year, but Michael made the decision to livestream his show again.

“As COVID-19 prevails, we didn’t want to put people at risk,” Michael says of his decision. “We’ve always streamed our live shows for global patients and fans around the world, so this isn’t that much of a change.”

By hosting his show virtually, Michael is also able to further diversify his models, both in terms of locations and health conditions.

“Virtually makes it easier to incorporate patients from around the world and patients who otherwise wouldn’t be able to participate because of their condition,” he says.

You can join Michael and the CreakyJoints family for the Tumbler and Tipsy by Michael Kuluva 2022 Collection event, airing on Tuesday, September 14, 20201 at 8 p.m. ET via YouTube.

Prior to the show, at 7 p.m. ET, CreakyJoints will be co-hosting a #CreakyChats on Twitter with the Canadian Arthritis Patient Alliance and CreakyJoints Australia. During the chat, members can connect with Michael to discuss his work and ways to amplify chronic illness representation and voices. To participate in the live #CreakyChats, follow CreakyJoints on Twitter.

Be a More Proactive Patient with ArthritisPower

Join CreakyJoints’ patient-centered research registry to track your symptoms, disease activity, and medications — and share with your doctor. Sign up here.

This story was told to CreakyJoints by Deidra “Deige” Williams, a 37-year-old creator, graphic designer, and brand builder who lives in Connecticut.

Here is Deige’s story about how her approach to her rheumatoid arthritis diagnosis has changed over the years and how she is using her experience to effect change as a member of the Patient Engagement Advisor Panel for ArthritisPower and the Global Healthy Living Foundation.

***

When I was 16, my family and I traveled to Disney World. As we waited for our room to be ready, I should have been thinking about the rides I’d go on and the famous park food that I’d eat. But all I could think about was the pain my arm.

Between traveling and waiting, I had been carrying my luggage for a long time. Now, this would make anyone’s arms weak. But the pain in my limbs went beyond a normal soreness. Even after I put down my bags and some time had passed, my hands were like claws; unable to be opened or closed.

Later that night, I found myself in the emergency room. My elbow to my fingertips, as well as my ankles, were completely frozen and stiff. I didn’t know what was wrong with me and, as it turns out, neither did the ER team. They chalked it up to the soreness and sent me on my way. A day or two later, my hands were back to normal, and the episode was forgotten.

Until it happened again.

My Grandmother’s Intuition

In the weeks that followed, this paralyzing pain would appear out of nowhere. First, in my left hand. Then in my right ankle, followed by my left ankle. Around and around the pain would go.

Then one day I tried to get out of bed and I fell on the ground. My mom thought these were growing pains — not because she didn’t believe my pain, but because she didn’t see the larger picture. I went to the pediatrician, who tested me for a few ailments and said I might have Lyme disease, but never officially diagnosed me.

It was my grandma who got everyone — myself included — to understand how serious the situation was.

“We need to figure out what’s wrong here,” she said. As one of 11 children, almost all of whom had total knee or hip replacements, she just knew something wasn’t right.

We traveled 30 minutes out of town to meet with a juvenile rheumatoid arthritis (JRA) specialist, who was finally able to solve my medical mystery: I had rheumatoid arthritis.

Finding the Right Treatment

I don’t think I fully understood what it meant to have RA at that time, especially as a teenager. And I don’t think I cared to find out. After all, I was 16. I was more concerned about whether I could get a pair of the trendiest sneakers rather than whether I could wear them with RA.

As it turns out, I couldn’t because RA can often shift the position of your bones in your feet, causing “flatfoot deformity.” You feel pain in the tendons in the arch of your foot, and on the inside and outside of your ankle. Or you may get fallen arches. Not only did this limit my fashion choices, but it caused immense pain.

My doctor agreed to put me on prednisone to help with that issue. I didn’t think to ask about the side effects or other options. I just wanted the pain to go away. It turned out to be a terrible decision I still regret. It made me gain 30 pounds in two months. As a senior in high school, the sudden weight gain did a number on my self-esteem.

I tried several medications, including methotrexate and a biologic and then a second biologic, which was the first treatment that really worked for me. I took it until I turned 19, which is when I got pregnant with my first son and had to take a medication break. But after I had him, I got back on it and I’m still on it today. It’s been the most consistent medication for me.

The Road to Remission

After the birth of my son in 2004, my doctors told me I was in remission. I was having little to no flares, due largely to my medications, and that’s continued for the most part since then. These days, I rarely have to think about my RA during my daily life.

I did have one pretty bad flare-up about two years ago, but my history with RA has helped me learn how to alter my lifestyle and movements in ways that make dealing with sudden flare-ups easier. This means changing my shoes to a pair that provides more relief (like flats), or stop bending to the ground to pick things up, which becomes too painful. Knowing what joints to think about and protect can be an adjustment, but it makes a big difference. Otherwise, your brain automatically moves your joints the way you’re used to moving them.

I’ve also gone through several procedures that help relieve pain and make my joints more mobile. For a long time, my left hand wasn’t able to rotate. I struggled with simple tasks, like collecting my change from the cashier in a drive-thru — I would always drop the change on the ground. Eventually, I had synovectomy surgery on my left elbow. This procedure removes the synovial tissue around a joint in order to provide relief from inflammation.

But overall, my joints are holding up pretty well for someone who with RA for more than 20 years — the majority of my life. In my early 20s, I set a goal to get to 30 without having any joint replacement. I saw many family members undergo many joint replacement procedures over the years and wanted to avoid a similar fate. And here I am — 38 years old and joint replacement-free.

Learning to Make Connections

Because I was so young when I was diagnosed with RA, I didn’t realize the value in connecting with other RA patients. In fact, it was only a few years ago that I actively became a part of the chronic illness community. At the time, my friend Shantana had been diagnosed with RA and asked about my experience with it. I answered her questions, connected her with my doctor, and told her about CreakyJoints, a website whose Facebook page I followed but didn’t regularly interact with.

A health advocate at heart, Shantana asked me to join her in raising awareness about RA. But that had never really been my thing; I preferred doing small, behind-the-scenes work.  She kept asking and eventually convinced me to step out of my box and raise my voice.

Now, I am not only interacting with CreakyJoints regularly, but I’m a member of the Patient Engagement Advisory Panel for ArthritisPower. ArthritisPower is an app and research registry that lets people with different kinds of arthritis and rheumatic diseases track symptoms and disease activity and share results with your doctor. You can also participate in voluntary studies about managing arthritis.

As a patient advisor, I share feedback about everything from treatment, to health care, to app design, with a goal of making research more patient-centered. I provide firsthand experience, such as RA symptoms, medication side effects, and app use, to help inform research so that decisions aren’t made solely on what doctors think RA patients need.

I am able to advocate not only for myself, but for other RA patients — and it’s empowering.

Until now, only the people close to me would have known I have this disease. But participating in ArthritisPower has allowed me to step out of my comfort zone and speak up about the things that affect me and others.

My Advice for Others Living with Rheumatoid Arthritis

Trust your gut

It’s easy to think the doctor knows best. You may also worry that questioning them is rude. But you know your body best, and it’s up to you to tell them when something isn’t right. When my most recent flare-up lasted for a longer-than-normal period, I felt like it was worth trying something new. But my doctor wanted to keep trying the same things. Finally, I realized my doctor wasn’t going to listen to me, and I had to find one who would. In doing so, I eventually started new medicine and a regimen that worked.

Find a doctor you love

Health care is not one-size-fits-all and having a doctor who looks at how the illness impacts you personally is important. It’s also crucial that your doctor who makes you feel comfortable and not stupid. My doctor speaks clearly and makes sure I understand everything she says before I leave her office.

Do your own research

I’m a firm believer in Googling. I know many doctors get frustrated by it, but I think doing a little research beforehand helps you to advocate for yourself and to know what questions to ask.

If I Could Say One Thing to My Newly Diagnosed Self

I would tell myself to learn more about the medications used to treat RA. Educate yourself on their side effects and how they may affect your lifestyle. And find some support. There are people out there dealing with what you’re dealing with — step outside your comfort zone and they’ll be there.

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.

In my early 20s, I started experiencing unexplained pain throughout my body. I mostly shrugged it off because I didn’t “look sick.” Then at 26, I became pregnant and the pain intensified. I started to take this seriously and embarked on a marathon of doctor’s visits, hoping someone would have an explanation other than my job as an aesthetician to blame for the pain in my feet, back, hands, and jaw.

Finally, a few months after I turned 29, I finally found a doctor who took my pain seriously enough to test for a condition most doctors said I was “too young” for: rheumatoid arthritis (RA). That was the cause of all my pain. Or so I naively thought.

I would later learn that I also had osteoarthritis (OA) – a chronic disease that I find has many as similarities to rheumatoid arthritis as it does differences. I’ve been puzzled by pain in my back, neck, hands, feet, and knees that shouldn’t be there if my biologics are working — after a joint exam, ultrasound, and x-rays we discovered my joints were also sore from osteoarthritis.

Now, at 35, my life is drastically different than when this journey began. I no longer work as an aesthetician, as the joint pain from my illnesses makes it nearly impossible. I have lost partial mobility in my dominant hand, which has turned once-easy tasks into challenges. And I find myself spending way too much time explaining what it’s like to live with not one, but two life-changing chronic conditions.

Rheumatoid arthritis and osteoarthritis are two forms of arthritis that affect the joints differently

When I tell people I have rheumatoid arthritis and osteoarthritis, I’m usually met with shock and confusion. Shock because I, a 30-something, don’t match the image in their head of a “typical” person living with arthritis. Confusion because, despite all the efforts to raise awareness about arthritis, many people don’t know there are multiple types of arthritis.

Arthritis is not a single disease that affects only the elderly. Rather, it is a category of diseases characterized by joint pain, swelling, and stiffness. While arthritis becomes more common with age, it can affect anyone — even kids can have arthritis. Some of the diseases that fall within the broader category of arthritis or rheumatic diseases include lupus, gout, fibromyalgia, and, of course, my conditions — osteoarthritis and rheumatoid arthritis.

Although each of these diseases affect the joints, they do so in different ways.

• Osteoarthritis is the result of wear and tear on your bones’ protective cartilage.
• Rheumatoid arthritis, on the other hand, occurs when your immune system turns against your body’s tissues, causing inflammation, swelling, and pain that impacts the lining of your joints.

The pain of these two conditions affects more than just the joints

As an autoimmune disease, rheumatoid arthritis has side effects beyond joint pain. To start, the same underlying inflammation that damages the joints can affect organs and systems throughout the body, causing an increased risk of heart disease, lung disease, and more.

Certain medications used to treat rheumatoid arthritis can affect kidney and liver function. RA and the medications that treat it also make me immunocompromised, which makes fighting infections more difficult.

The pain and mobility limitations of OA also take a toll on people. OA can cause sleep issues, for example, and social limitations. OA can force people to give up their favorite activities or need to stop working. And while OA doesn’t necessarily cause these conditions, there are a number of co-occurring health problems that are common in OA patients and could affect how it is able to be treated, such as high blood pressure, heart disease, and diabetes.

Figuring out which arthritis is causing my pain can be a guessing game — even for my doctors

When I feel any type of joint pain, I make the trek to my general practitioner or rheumatologist. The same scene often plays out: I describe the severe stiffness pulsing through my hand, foot, neck, or back. They put me through a medical ringer; drawing blood, checking for inflammation, and scanning me with MRIs, X-rays, and ultrasounds. (Yes, all three. Thoroughness is key.) Then they tell me that yes, there are nodules in my joints, but all of the test results are “normal.”

Sometimes I get lucky and the doctors are able to pinpoint which arthritis is to blame. Usually, at that point, I’ve already been self-treating for the other. But hey, at least I got an official answer.  Part of the difficulty is that rheumatoid arthritis and osteoarthritis have many similarities.

• Both can cause swelling
• Both cause joint pain, occasionally at the same time
• Both cause mobility problems
• Both can require joint replacement surgeries
• Both can cause irreversible damage
• Both are more common in women
• Both are expensive to treat for the person living with the condition
• Both lack any type of cure

Living with two types of arthritis doubles the mental, physical, and emotional toll

For me, the biggest similarity between rheumatoid arthritis and osteoarthritis is that they’ve both taken parts of my life that I won’t get back — a job I loved, activities I enjoyed, and simple physical freedoms. Sure, some may think osteoarthritis is “better” because my body can still fight infections. And there’s the fact that OA causes way less fatigue and cognitive dysfunction (brain fog). But there are far more treatments for RA than for OA. Whenever the OA flares up, I have to accept that there isn’t much I can do to ease the pain; just wait and hope it passes a little faster than the last time.

There isn’t necessarily one I would rather live with over the other. I would, however, rather be living with just one — or, ideally, none.

Not Sure What’s Causing Pain?

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