Arthritis Body Image Self Esteem

When Kristine E. was first diagnosed with rheumatoid arthritis at age 13, she felt betrayed by her body.

“I’ve been a dancer for most of my life and did a lot of theater, and I was so aware of what my body was no longer able to do.  At a time when most people feel like they can do anything, I felt like I couldn’t do anything,” she says. “It felt like living in someone else’s body.”

Now, at age 28 and her diagnosis ultimately changed to fibromyalgia, Kristine says she has learned how to feel more like herself in her body. “Body image was a constant struggle at first, but time has been a huge factor in allowing me to process and adapt to a new way of living,” she says. “I’ve learned to give my body the support and love it needs instead of focusing on its limitations.”

That transition — from getting your diagnosis, understanding what it means for your body, then accepting the change as part of you — is not easy and can take years, says Kristen Carpenter, PhD, chief psychologist in the department of psychiatry and behavioral health at The Ohio State University Wexner Medical Center in Columbus. “It’s a big change from ‘normal’ and it’s not uncommon for people with chronic illness to suffer a blow to their self-esteem or feel angry, fearful, or less happy with their body,” she says. “It can significantly affect self-confidence in every area.”

Research supports this. People with rheumatoid arthritis were eight times more likely to have a poor body image than people without arthritis, according to a study published in the Archives of Rheumatology.

Not everyone diagnosed with arthritis will experience a change in their body image or self-esteem, however. There are a lot of factors that go in to whether someone is affected and to what extent, according to research published in the Archives of Neuropsychiatry.

For example, researchers found that people who were between 20 and 44, had some higher education, and/or had no additional disease tended to have levels of body satisfaction and self-esteem equal to people without illness. However, people who had been in treatment for arthritis for longer than five years, had physical changes in their hands and body, had problems walking, and/or who had significant changes in family and working life were more likely to see a decline in their self-esteem and body satisfaction.

“It’s important not to ignore this aspect of your illness. Feeling down about your body can lead to depression and other mental health issues, which in turn can hurt your physical health. It’s all connected,” Dr. Carpenter says. “These feelings can be very complicated and difficult to process. If at any time you start to feel overwhelmed or hopeless, or if you are having thoughts of self-harm, seek professional help immediately.” Your therapist or psychiatrist can be just as important as your rheumatologist or physical therapist, she adds.

To help normalize these feelings, we talked to people with arthritis about how their condition changed their self-esteem and body image — both in positive and negative ways — and their tips for dealing with it.

Realizing the Negative Consequences

It changed my core identity

Much of Kristine’s self-esteem came from her creative outlets. When those were affected by her illness, her perception of herself took a major hit. “My identity was based on being a dancer, a singer, and a writer but suddenly my body was no longer able to do those things,” she says. “I’ve always been a very creative person and losing these abilities shook me to my core.”

I avoided being in pictures

Pictures posted to social media can be a fun reminder of good times or, for people who struggle with body image, they can be a source of immense pain. The latter was the case for Laura H., 62, who has joint pain and deformity from Ehlers-Danlos syndrome (a disorder that affects connective tissue, making her joints hypermobile) and osteoarthritis. “For a long time, my self-esteem was very low. I hated being in photos because I felt so awful about how I looked,” she says.

My body stopped cooperating

“I have always been a fairly confident woman but that changed with my illness,” says Nicole T., 44, who has multiple sclerosis and possibly rheumatoid arthritis. “My body just was not cooperating like I was used to. I was having speech difficulties and I had to walk with an assistive device.” These outward changes made her feel self-conscious and frustrated with her body.

I quit being a model

Jessie S., 34, had to give up her career as model due to her rheumatoid arthritis — a painful decision that hurt her body image and her self-esteem. “I left modelling in part because I couldn’t contort my body into various poses, like being asked to support my body weight leaning on my wrists,” she says. “It was hard but I knew it was time I stopped going to photoshoots because it wasn’t worth the pain the next day.”

I nitpick every aspect of my appearance

“When the pain from my flare-ups is really bad I get really critical of my body,” says Filip S., 24, who has ankylosing spondylitis. “My therapist says it’s a way of avoiding dealing with my feelings about the AS — by focusing on things I think I can change, like my love handles, I don’t have to deal with the harder fact that AS is changing my body in ways I can’t do anything about.”

I can’t look in the mirror when I wake up

“I am so puffy and swollen from inflammation when I wake up that if I look in a mirror, I scare myself,” says Victoriono V., 55, who has psoriatic arthritis. “I worry that I scare my wife and kids too although they are too nice to say anything.”

I’m afraid my body will become a burden on others

After Nicole was diagnosed, she went through a period where she really struggled with her feelings about her body. “I wondered if this would change whether someone would want to commit to a relationship with me with such an uncertain future,” she says. “The idea that my body could potentially become a burden on someone crossed my mind often.”

The uncertainty of my health rattles my confidence

While doctors were trying to figure out the source of her joint pain and other symptoms, Andrea S. says she worried about the future a lot. “At the time I didn’t know whether this was my body’s new normal,” says Andrea, who was ultimately diagnosed with fibromyalgia and ankylosing spondylitis at age 27. “I felt much more vulnerable than I had ever before. It rattled my confidence to not be able to do even simple things that used to come automatically.”

It made me depressed and gain weight

Now 43, one of Andrea’s issues with her body image has to do with her weight. The chronic pain from her illnesses has made her depressed and medications she takes for her mental health have contributed to a significant weight gain of 100 pounds, which she says has made her feel very unhappy and uncomfortable in her own skin. “I have very bad self-esteem,” she says. “It’s mostly from the chronic pain. It makes me hate my body because every day I wonder if tomorrow will be worse.”

Being limited with physical activity led to an eating disorder

Before being diagnosed with ankylosing spondylitis, Filip was athletic and fit. Now, thanks to the pain and disability caused by his illness, he’s lost his muscular build — and with it, his self-esteem.

“I worry a lot about gaining body fat and not being able to see my abs,” he says. “When my pain is bad I’ll skip meals because I know I can’t work out.” He didn’t recognize this pattern as an eating disorder at first, but he says his therapist helped him make the connection and he is working toward a healthier relationship with food and his body image.

The brain fog is embarrassing

“I used to have a really sharp memory but I don’t know if it’s brain fog from the arthritis or just getting older but I forget a lot of things these days,” Victoriono says. “It’s really embarrassing to me and makes me feel bad about myself. There are things I should know and I just can’t think of them. I feel dumb.”

I felt older than my age

Twenty-five should be the physical prime of your life so when Jessie was diagnosed with early-onset rheumatoid arthritis, it really changed how she (and others) saw her body. “It hurt more than anything that people didn’t understand why I was so exhausted and just wanted to curl up in a ball and sleep right then and there, no matter what the circumstances were,” she says. This inability to keep up with her friends made her feel down about her body.

I was bullied for looking frumpy

“Wearing high heeled shoes is crippling for me but wearing flat ones meant I got bullied,” Jessie says. People thought of her as frumpy and dressing older than her age, which took a toll on her self-esteem. It was tough not being able to wear all the fun clothes and trends that her friends did for a night out, she says.

I had to overhaul my closet

If it isn’t the inflammation changing Victoriono’s appearance, it’s the visible plaques on his scalp, elbows, and backs of his knees. “I never wear shorts anymore, never, not even at the beach,” he says, adding that he’s had to get rid of other favorite clothing items, including some short-sleeved shirts and baseball caps that hit at the wrong spot. “I’m always worried what other people are thinking when they see it,” he says.

I became a hermit

Because of her illness, Laura says she avoided doing things she’d previously loved. Some of it was due to pain and fatigue but a lot of it was due to how she felt about her body and appearance, she says. “I didn’t go places, I didn’t do things with people, I mostly stayed at home,” she says. “I work for myself from home so I didn’t even have to interact with people at work.” Isolating herself, though, made her self-esteem even lower.

Feeling sexy and romantic takes more effort

The ability to feel attractive, both for yourself and to others, is a big component of self-esteem and can be difficult for people who are limited by their arthritis. For instance, showing and receiving physical affection has been hard for Jessie. “My boyfriend is a strapping great gent of 6’4” and I’m a little girl of 5’4” so sometimes even holding hands for any period can be painful,” she says. “The weight of his hands on my joints or spreading my fingers wide enough can cause pain.” But because he understands that, he’s able to help her feel loved and attractive, she says.

Recognizing the Positive Upsides

It motivated me to lose weight

The upside of getting diagnosed with EDS and arthritis was a motivation to take better care of herself, says Laura. She started a low-carb diet to help manage her symptoms and was pleasantly surprised to discover it helped her lose the weight she’d been trying to shed for years. “I lost 105 pounds and it has been life-changing,” she says. “It nearly eliminated the inflammation in my body, normalized my high blood pressure, improved my kidney function, and reduced my chronic pain a lot.” The health benefits combined with the physical changes helped her see herself in a whole new, happier, light. “I can honestly say I feel and look healthier than I have in decades. I love being in photos with family now,” she says.

It helped me appreciate the little things about my body

Not being able to do some things has helped Japhet A., who has fibromyalgia, be grateful for all the little things her body can do, she says. “I try to give credit to my body for doing amazing things,” she says.

It’s made me more grateful for my ability to heal

After living for years with multiple sclerosis and rheumatoid arthritis, “I am so impressed with my body’s ability to heal itself in various ways,” Nicole says. When so many things are going wrong in your body, it really helps you appreciate the many and miraculous ways that your body deals with all those challenges. “In many ways I feel better now than I had for quite some time,” she says.

It’s inspired me to try new things with my body

Filip’s physical therapist recommended Pilates as a way to help strengthen his core to support his spine and reduce some of his symptoms. “I would never in a million years have done Pilates before, but I actually really like it,” he says. “This got me to try something new and I am seeing improvements from it.”

My diagnosis actually boosted my self-esteem

Japhet had been plagued with joint pain all her life, but growing up, her doctors blamed it on her weight and told her to go on a diet. Yet even when she did lose weight, her joint pain remained. When she was told that her pain was due to her weight or lifestyle, Japhet says it made her feel very down about herself and angry at her body. Once she had a diagnosis (fibromyalgia) and an explanation for her symptoms, she felt liberated. “I now know that I feel pain for a medical reason, not because I’m lazy or weak,” she says.

“It didn’t make me hate my body,” Japhet adds. “It was more like, I look back at everything I’ve gone through and I feel strong and proud of my body for going through this half my life without actually knowing I had it,” she says.

Arthritis changed how I date — for the better

Finding a partner who understood her illness and the limitations it placed on her body has been a critical part of learning to love her body more herself, Jessie says. “I am so lucky to have found my soulmate, who happens to have ankylosing spondylitis. We understand each other’s needs and don’t put pressure on each other to do things we can’t,” she says.

I’ve learned to trust my loved ones’ perceptions of me

“My husband is my caretaker and he always tells me how beautiful I am,” Andrea says, adding that his love of her body is helping her see herself in a kinder light. “He lists off compliments of things he likes about me and tells me he loves me.” She says she’s learning to lean on his support when she feels particularly bad.

Tips for Improving Self-Esteem and Body Image

Set a physical goal

Your body may not be able to do what it used to do but it can still do many strong, beautiful, and amazing things. To reconnect with her body in a physical way, Kristine set a goal to run a marathon. “Training for and eventually running 26.2 miles is an enormous undertaking, especially for someone with my condition, but I wanted to do something that would show how powerful determination, hard work, and willpower are,” she says. “I crossed that finish line and have the medal to prove it. When I have bad days or weeks, I look at that medal and am reminded that if I put my mind to it, my body can do incredible things. I may have to do things differently than others, it may take me more time, but I can get there, I can do it.”

You might be reading this and thinking that a marathon could never be in your future — and that’s perfectly OK. (Remember, it’s not in the future of most people who don’t have arthritis or chronic pain.) Think about other physical goals that make sense for your health and lifestyle, whether that’s starting a yoga regimen, bike riding, or doing a local hike you’ve been meaning to try.

See a therapist who specializes in chronic illness

When you’re struggling with body image and self-esteem, one of the best things you can do is get routine mental health care, just like you get regular check-ups with your other providers, Dr. Carpenter says. “They can help you see your body from an outside perspective and teach you techniques, like cognitive behavioral therapy, to reduce negative thought patterns,” she says. While it’s great talking to friends or family members for support, that’s not always the right substitute for help and advice from a mental health professional trained in chronic illnesses.

To find a therapist who specializes in chronic illness, you can start by ask your doctor for a referral, check with local arthritis groups in your community, or use the Find a Therapist tool on PsychologyToday.com, which lets you use “chronic illness” in the search filter. (Once you add your state or zip code, you can click on “chronic illness” in when you filter by “issues.”)

Keep a running list of things that help

A favorite lipstick. A special coffee. A photo album of loved ones. A walk in the sunshine. A call to a best friend. A funny movie. Everyone has little things that give them a boost on bad self-esteem days but those can be hard to remember in the moments when you’re feeling most down. “Write down everything you find that helps you so you can refer back to that list later, when you need a pick-me-up,” Dr. Carpenter says.

Meditate, don’t marinate

All future is uncertain (especially now) but it can feel even more so with a chronic illness, Dr. Carpenter says. The trick is to learn to embrace the uncertainty and find ways to live with it, rather than trying to control it by imagining every terrible scenario. “Don’t get caught up in the ‘what-if’ game,” she says. “You can’t change the past, you can’t control the future, so focus on the present.” Having a hard time escaping these thoughts? She recommends doing a daily guided meditation to help teach you how to be more present.

Understand your limits

Japhet has learned that pushing her body too hard is a recipe for failure, leading to increased pain and decreased self-esteem. Learning to set appropriate, healthy limits is a way to respect her body and feel good about it. “I know what I can and can’t do and I refuse to push myself to the limits anymore,” she says.

Dress up your way

Wearing high heels is usually a big “don’t” for people with arthritis and chronic pain. But for Japhet, heels help her feel sexy and pretty. So when she is feeling well, she likes to celebrate by dressing up and wearing her signature heels. “I wear them as long as they don’t hurt and when I start to feel pain, I change into flats,” she says. “I also make sure to take lots of pictures when I’m dressed up.”

If high heels aren’t your thing — and for many people with arthritis, they’re just too painful — choose any item of clothing or accessory that makes you feel and look fabulous.

Find your own personal style

After being a model and showing off other people’s fashion style, Jessie has had a lot of fun developing her own personal style that has flair and accommodates her RA. “I’ve embraced that who I actually am is a Wild West-loving cowgirl so now I wear cowgirl boots, which are both stylish and flat — a win-win!”

Keep looking for an effective treatment plan

An accurate diagnosis and an effective treatment plan sometimes take a lot of trial and error when it comes to arthritis and other chronic illnesses, and such was the case for Kristine. “Over the years, my diagnosis and medications have gone through some changes and getting the right ones has really helped me feel a lot better about myself and my body,” she says.

For Laura getting two hip replacements increased her mobility and her ability to do things she enjoyed again. This, in turn, motivated her to take care of her body, which she says helped boost her body image.

Follow a diet that makes you feel good

Eating a low-carb diet was a turning point for Laura and her relationship with her body. She used to hate how she looked and felt and now she says she feels like a new person. “I’ve struggled with my weight and my feelings about how I look for years, but now I have maintained my weight loss for almost a year, which has given me a huge boost of confidence and shown me what my body can do when I treat it right,” she says.

Let others love you

There are some days when it can feel impossible to pull yourself up when your self-esteem or body image is low. These are the days when you need to reach out to and rely on your loved ones, Andrea says. “My husband loves me so much and that helps me love me too,” she says. When they tell you what they like about you or your body, believe them!

Write down positive thoughts about your body

Another strategy Andrea uses, in addition to seeing a therapist, is to keep sticky notes handy and write down positive thoughts about herself and others. These gentle reminders help her stay focused on the good things.

Get a creative outlet

Ceramics, painting, and any other artistic endeavor are Fillip’s saving grace these days, he says. “On my worst days, when I am hating my body, I will paint or sculpt it the way I see it or use the creativity to get my feelings out, so I don’t hyperfocus on my flaws,” he says.

Find reasons to hope

Just when Nicole says she was giving up hope that her body wouldn’t always be this painful and frustrating, she was introduced to a doctor who gave her hope. “She told me about someone who had been wheelchair-bound and by changing certain things in her life, she was able to not only walk again but ride her bike.” This helped her see her body in a more hopeful light and renewed some of her confidence in herself.

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. Learn more and sign up here.

Interview with Kristen Carpenter, PhD, chief psychologist in the department of psychiatry and behavioral health at The Ohio State University Wexner Medical Center in Columbus

Kurt E, et al. Body Image and Self-Esteem in Patients with Rheumatoid Arthritis. Archives of Neuropsychiatry. September 2013. doi: https://doi.org/10.4274/npa.y6195.

Zhou C, et al. Impact of Rheumatoid Arthritis on Body Image Disturbance. Archives of Rheumatology. March 2019. doi: https://doi.org/10.5606/ArchRheumatol.2019.6738.