Rebekah C used to be a very self-assured person until, a couple years back, psoriatic arthritis (PsA) came at her — and came out swinging. “Most of my coworkers were nice but I dealt with some who would jokingly tell me ‘not to infect them’ and flinch when they saw my hands,” she recalls. “This was during a particularly bad flare that lasted nearly a year, when my hands and feet were splitting open.”
Many of us living with chronic inflammatory arthritis like PsA, rheumatoid arthritis (RA), and ankylosing spondylitis (AS) not only have debilitating pain; we are also dealing with another brutal side effect: shame. Embarrassing things happen to us on a daily basis: sweating profusely from steroids, brain fog or being forced to wear “pull-ups” to prevent incontinence to name just a few.
“I could really use the motorised carts at the grocery store but I suffer through because at age 32 I get too many looks and comments about using them,” says one AS patient.
These humiliating moments don’t discriminate — they happen to all of us and they happen wherever we are: at home, at school, at social events or at work. It’s all very humbling.
“I’ll push the elevator button and not be able to move fast enough and have the doors close in my face,” says Michelle K, who has AS. RA patient Phyllis A adds, “I had to attend a dinner function for my company. The silverware was too heavy and I couldn’t lift it up to eat.”
When Arthritis Causes Shame
Shame isn’t always caused by criticism from insensitive people; it can also be self-induced, also known as self-stigma. Either way, “the emotion of shame is very painful, too,” says Katie Willard Virant, LCSW, a psychotherapist in St Louis, Missouri who treats many patients with chronic illness and is the author of the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness. One simple humiliating moment can lead to a dangerous “shame spiral,” in which we’re ashamed of being ashamed, embarrassed of being embarrassed.
A lot of times this self-stigma of shame is actually covering up our own grief, Willard Virant adds — the grief that we can no longer do simple tasks for ourselves anymore.
When Arthritis Makes You Ask for Help
“My husband has to help me put on and take off my bra,” admits RA patient Cassandra. Likewise, Kelly T’s husband found her sobbing at the kitchen table after she was unable to give herself her first methotrexate injection. “I’m not scared of needles,” she explains. “I could not get the cap off the syringe. I could not get the syringe in the vial of methotrexate. I could not load the syringe without tiny air bubbles. He took everything and asked where I wanted it. I told him I could do it. He said after helping me, he should at least get to stick me!”
Appearing weak and crippled to your spouse can be very embarrassing and to many, not attractive. “I was actually wheelchair bound for about seven months,” Rebekah adds, “and it was really hard to be 30 years old being wheeled around by my husband.” Once during a flare-up, Phyllis couldn’t turn the doorknobs to leave her house. She was crying, trapped, frustrated. “My husband walked in, turned around, left for the hardware store and replaced every doorknob in the house.”
That time, she didn’t have to ask for help, which is often almost as embarrassing as not being able to do the task. Sometimes we will avoid asking for assistance until the cows come home to avoid feeling stupid and helpless. Not surprisingly, this often backfires.
Jennifer S admits that she once sat in her car for an hour and a half after work, tears streaming down her face, because she couldn’t turn the key to start it. “I finally found a coworker on his break on the next shift who was able to start it for me. But he gave me lots of funny looks.”
It’s not uncommon to be so embarrassed of our conditions — and the ways they impact our independence — that we’d rather suffer in silence than explain to a loving partner or a complete stranger alike why we can’t get out of the bathtub or turn the ignition. (Jennifer ended up buying a new car with a push-button start.) Don’t get us started on embarrassing why-we-don’t-want-to-have-sex-stories (that could be a book).
I can’t tell you how many times I’ve let someone crush my fingers in a friendly handshake, rather than just simply say, “I’m sorry I can’t shake your hand. I have RA and I’m in a lot of pain today.” I stick out my digits, wince and prepare for the inevitable crunching.
When Arthritis Causes Accidents
Sometimes we are forced to reveal our illnesses, because accidents do happen a lot. “I don’t have a lot of strength in my hands/wrists and one time in public I dumped a large coffee down the front of me and it landed on the floor and drenched the gentleman’s legs and feet beside me,” recalls Julie E, who has RA. “I was so embarrassed! Thankfully, he was understanding and even bought me another coffee.”
Ankylosing spondylitis “can affect your ability to control your bowel and bladder,” explains Sara B. “When my back is really sore I tend to have some bladder leaking problems because of the way my lower back and sacroiliac (SI) joints are affected.”
Unfortunately, a lot of embarrassing arthritis moments revolve around the bathroom. It’s hard to admit that when my shoulder is flaring, I cannot always reach my nether regions after going number two and since America doesn’t believe in bidets, it can get messy. I know I’m not alone.
“I cry every time it happens. About two to three times a year, it gets that bad,” says Melissa S, who has RA. “I’ll just sit there on the toilet for forever. I literally sat there for over 30 minutes one time, not wanting to ask my husband. I’ll be crying because it’s absolutely humiliating and damaging to your pride to have to ask your spouse to wipe your ass for you. But he always does it for me when I need him to and tells me not to be humiliated.”
When Arthritis Affects Your Vanity
Many people with inflammatory arthritis don’t have the luxury of keeping their illnesses a secret, because of very visible deformities, swelling, rashes and skin problems and more. Having these chronic diseases is not for the vain and many of us are ashamed of our new and not so improved bodies.
“The hardest thing I’ve struggled with appearance-wise is I’ve gained 80 pounds (roughly 36 kilograms) in a short amount of time due to steroids and I’m hunched forward and my neck is fusing to the left,” says one AS patient who prefers not to be named. “I didn’t realise how hunched forward I was until someone took my picture recently.”
For psoriatic arthritis patients, nail pitting and discoloration and uncontrollable blemishes, red patches, lesions and scales on the skin can cause anxiety and despair. Rebekah has open wounds on her feet and legs “that I constantly cover. My chest is currently breaking out, so no low-cut shirts.” People are often unaware of the disease and therefore can be intentionally or unintentionally unkind in public.
Once after a really important pitch meeting, Brittany W, a sales manager who has PsA, stood up from her chair at a conference table and left behind “snow” (psoriasis flakes) all over her chair. “The client noticed and commented on it, which was awful. I didn’t make the sale. It definitely was a terrible moment.”
We’re hard enough on ourselves. Add to that the cruelty and ignorance of others, and it’s hard to deal with. “There’s definitely constant fear about being judged,” says Brittany, who has had PsA for 10 years. “My legs and arms and forehead have visible psoriasis, so it’s always embarrassing when you see people staring. But I think having it in high school helped me get over the negative comments because no one is as mean as high schoolers.”
How to Stop the “Shame Spiral”
Brittany has managed to make some peace with her PsA, but for those who are still struggling, Willard Virant insists that you don’t have to live your life in a constant state of shame. “One way to interrupt the shame spiral is to really try to not be ashamed of being ashamed. I advise patients to remember that it’s just a feeling and it will pass.”
Here are Willard Virant’s other tools for combating feelings of embarrassment around your chronic illness:
First, stop ruminating
Something embarrassing happens, and we run it over and over in our heads like a movie. How do you unhook from that thought? “I sometimes advise clients to put up a big STOP sign in their minds,” says Willard Virant. “Say to yourself: ‘I don’t need to go down this road. I thought the thought and now it’s time to redirect.’ Disengage from the feeling. We can observe our thoughts, but we don’t have to get hooked inside of them.”
Another image Willard Virant uses is to imagine your embarrassing thoughts in a stream running by you. You can look at it, you can notice it, but there it goes down the stream away from you. Can you find safe ground where you can stand and just watch the thought from a distance without getting hooked into it?
Practice go-to responses
When someone says something offensive to you, being prepared to answer it can empower you. Instead of standing there frozen, you could say something like, “Why would you think that’s acceptable to ask me or point out to me?” You can also make it a teachable moment, which is what Brittany did in the pitch meeting. “I just explained that I have psoriatic arthritis and then thankfully their kid had eczema so we were able to talk about that.”
Shame is about having difficulty with being seen and feeling unworthy to be seen by other people. “This can lead to isolation, so try to mitigate that,” Willard Virant says.
Carissa B took her daughter to the supermarket even though she was in a really bad RA flare. “I hopped on one of the scooters and headed down the frozen food aisle. My daughter proceeded to sing loudly, ‘They see me rollin, they hatin’. Tryna catch me ridin dirty.’ We started laughing at each other and everyone in the aisle was laughing along with us.” Carissa says her daughter, though only 10, has helped her get through some really tough days. “Between me getting past the self-guilt and learning how to work the dang thing, her song couldn’t have been more perfectly timed. I could have cried and instead she ended up making a lot of people laugh that day.”
Sharing embarrassing moments with a trusted family member or friend is key, Willard Virant adds. “[Researcher] Brene Brown talks about ‘speaking your shame.’ Don’t bury your feelings. Talking about it can interrupt the shame spiral.”
Remember you’re not alone
“None of us is an island,” says Willard Virant, who herself has Crohn’s disease. “We, especially in our culture, put such an emphasis on independence. That’s a myth. We’re all interdependent.” Remember, chronic illness is more common than you think. “There’s strength in numbers. If we can be visible, it normalises the fact that we [the chronic illness community] are not a small population.”
Learn to love the new you
It’s not easy but “there are ways to build yourself up,” Rebekah says. “I do take less stock in others’ opinions now, but there will be days where the negative inner monologue rears its ugly head. Recently, I decided to do a little pick-me-up. I bought supplies to adhere my own fake nails and cut them down to look like regular, boring nails. Nails that no one would look twice at. It’s funny how such a little thing can help. Just taking control of something as small as my nails really helped.”
Brittany used to wear pants all the time to hide her psoriatic arthritis but the side effects of some medications made her so warm she had to wear shorts and T-shirts, even in winter. “I had to accept it because of comfort. And then I decided to embrace it, and I started posting pictures to Instagram where my legs were out. I hashtagged it so that others could see it’s okay to show your skin even if it isn’t perfect. I remind myself that I’m more than my body. Everyone has body issues and it’s okay because I have friends and family who love me and who don’t care about my skin.”
“Don’t be ashamed of your scars,” adds Heidi P, who has RA. “They are just a reminder that you are a survivor. You are stronger than whatever tried to hurt you.”
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This article has been adapted, with permission, from a corresponding article by Dibs Baer on the CreakyJoints US website. Some content may have been changed to suit our Australian audience.