A few months ago, psoriatic arthritis patient Sue P. met for lunch with a friend who also has PsA. The two were discussing their disease activity, when a woman sitting next to them butted into the conversation.
“Excuse me for listening,” she said, “but neither of you have gnarly bumpy fingers. You should get a second opinion.”
“I said, ‘OMG, thank you,’” Sue recalls. “’You are so right, we need to find another doctor!’ The woman walked away happy. We just had to laugh over it.”
Sue and her friend had a good attitude about the interjection, but what’s not so funny is when people — from complete strangers to your spouse — intimate or outright accuse you of not having arthritis, or exaggerating or faking the excruciating pain, debilitating fatigue, and other symptoms that come with it.
“These are invisible diseases,” explains Katie Willard Virant, LCSW, a psychotherapist in St. Louis who treats many patients with chronic illness. “For most people, if they can’t see it, they don’t understand it.” Virant also writes the Psychology Today blog Chronically Me: The Emotional Landscape of Chronic Illness.
It’s often easier to tell an eavesdropping stranger or the jerks who tsk tsk you for parking in a handicap space to buzz off and mind their own beeswax (that’s putting it politely). Or to ghost an unsupportive or negative friend who refuses to acknowledge your suffering. Valerie G., who has ankylosing spondylitis, had one friend tell her she should stop feeling sorry for herself. “She had no idea what kind of fighting we do every day just to survive. We are no longer speaking.”
Bye, Felicia! Right? Sometimes.
It’s much more complicated to deal with disease deniers you cannot easily kick out of your life. “It’s very difficult to have a close relationship with somebody who thinks you’re faking or exaggerating it,” notes Virant, who has Crohn’s disease. “Our illness experience is such a part of our identity.” Dealing with a partner, sibling, in-law, coworker, or even doctor who doesn’t believe you takes much more nuance.
Misunderstanding the Experience of Arthritis
One reason people don’t “get it” what you’re going through is the lingering misconception that arthritis simply means that your knee hurts on a rainy day or you just need to pop a couple of Advils when your elbow aches. People don’t understand the debilitating pain that progressive osteoarthritis can cause, or that rheumatoid arthritis is an autoimmune disease and comes along with a laundry list of serious comorbidities.
“I’ve learned that most people don’t understand it and don’t want to,” says Sabrina R., who has psoriatic arthritis.
The come-and-go nature of arthritis can also be a big reason people think you’re faking it. Some days you might be okay; other days you feel like you got run over by a truck because of painful flares that come out of nowhere. Why were you complaining yesterday but today you’re totally fine?
“They just don’t understand the good day/bad day part,” says RA patient Soyia E.
Beyond ‘Faking It’: Helping People See the Truth About Arthritis
How do you convince someone important in your life that you have serious pain or fatigue and you’re not just milking it for attention, to get out of chores, blow off events, or to skip work?
First, know that you don’t owe anyone an explanation, says Virant. And you should never diminish your symptoms to make anyone else feel comfortable.
“You may start to doubt yourself and have to build your sense of self back up. Remember, the other person’s lack of belief is about them and not you,” she explains. “Remain firm about what your own sense of reality is. Say to yourself, ‘This is what I’m experiencing and it’s not fake.’”
However, this can be easier said than done. Having a chronic illness like arthritis does a number on our bodies and our brains. “Just coping with pain and uncertainty every day takes an emotional toll,” Virant confirms. “We have to grieve the old self that was able-bodied in order to make room for the new self. A lot of feelings come with that grief, like anger and sadness.”
For the sake of your physical and mental health, you have to deal with the deniers. Here’s how fellow people in the arthritis community have handled these challenging and frustrating situations:
Dealing with Partners and Spouses
The house is a mess. You don’t want to have sex. A bike ride is out of the question. Why? Because you’re in terrible pain. And yet, so too many people living with arthritis have been called lazy, boring, or even asexual by their spouse/partner. Sound familiar?
“My husband doesn’t get this illness at all,” adds Karen S., who also has PsA. “He calls me lazy at least once a month. Then he expects me to clean out the basement, do my regular housework, and cook our meals. Oh, let’s not forget the laundry and grocery shopping I totally manage by myself.”
“I work with my fiancée as a tradesman,” says Michael W., who has AS. “I complained of a sore knee for three days and it progressively got worse. I asked her to climb a ladder and change some lights and she told me to suck it up, that my AS normally doesn’t stop me from doing it and to just get going. Six hours later I was in an MRI and had fractured my knee. Then she felt guilty.”
“My husband just told me last night that I use my pain as an excuse for everything,” says AS patient Tami J. “I work two jobs. I own a salon and do nails about 50 hours a week and waitress on the weekends about 20 hours. Of course I’m in pain!”
If your spouse/partner isn’t able to see your pain or pretends to be open to it but just can’t get there, “that’s a real problem in the relationship,” Virant says emphatically. “They have to want to understand you.” If anyone should be reading up on your illness and going to doctor’s appointments with you, it’s your life partner.
“When my symptoms first started my husband seemed upset with me because I wouldn’t want to go out and do things as much because I was in extreme pain. He would tell me it was all in my head,” says Angelina K., who has psoriatic arthritis. “But after several doctor visits and seeing my fingers folding he finally understood what I was feeling was real. Now he is my total support system.”
No question that the non-ill partner is going to have to do more and take up the slack in the household. That can cause resentment. Remember, chronic illness doesn’t just affect you. Your partner can experience grief and anger, too.
But there is no reason to call you names.
“I wonder if categorizing of someone as ‘lazy’ is a way of not delving into the pain as a couple of those changed roles,” Virant says. “Can the couple face the pain together? We’re both sad about our new reality and wish it could be different. Can we be joined in that wish that it could be different without blaming the other?” Virant highly recommends couples counseling. “Honest compassionate communication can go a long way.”
Janet K. admits that when her husband was first diagnosed with AS she accused him of faking it.
“I had some doubts early on and I haven’t always been as supportive as I should be. I’m sorry for that now. I think part of my issue is that I didn’t want it to be true,” says Janet. “Sounds stupid, but I just couldn’t face it for years. I still pray for a miracle every day. When I accepted that he has AS, the grieving started. I’m still adjusting to the life AS forces you to live. I’m getting it more every day.”
Dealing with Family Members
You choose your spouse/partner, but you can’t help the family you’re born into or married into. Dealing with parents, grandparents, siblings, and in-laws who don’t believe you’re in real agony can be a major pain in the butt for a long time, maybe even a lifetime.
Thryn R.’s dad knew she had AS, and yet when she was younger he would say she was making up symptoms to get out of doing chores. Erin P., who has had AS since she was 17, says, “I still don’t think my mom really believes me. I’ll say how certain foods trigger more severe pain and she says I’m just being difficult and that I ate those foods when I was younger and was fine. She’ll tell me to just stretch, take a hot bath, and some Advil.”
“It’s the lack of acknowledgement that gets me,” says Heather B., who also has AS. “Some of my own family seems to simply ‘forget’ our talks about this, like they’re hearing it for the first time. We totally don’t fake this. If anything, we fake being well.”
“I quit trying to make them understand,” says PsA patient Lori J. “I stopped explaining my symptoms and pain. I just did what I could and didn’t try to cover when I was in pain. I started going to bed when I was tired. Their being mad or angry doesn’t make me want to exhaust myself to please them anymore.”
Many arthritis patients we spoke to seem to get a ton of grief from their mothers-in-law. “My mother-in-law said, ‘I didn’t get arthritis until I was in my sixties,” recalls PsA patient Mitzi M. “It’s not the same kind, lady. I usually drink a couple glasses of wine before she comes, so I care less what she thinks. I have explained that they are autoimmune diseases. My husband has Crohn’s, diagnosed at 13. Our oldest son was just diagnosed with Crohn’s last summer. She is more sympathetic to them.”
Amy C.’s mother-in-law called her a hypochondriac. “During AS flares she’d say things like, ‘What’s wrong with you? Do you need to run up to the little clinic in town? Or save yourself the doctor visit and take some Tylenol?’ She made so many comments downplaying my illness, yet for a year straight complained about her toe hurting like it was the end of the world.”
Virant believes that it’s your spouse or partner’s responsibility to stick up for you during an attack of the MIL. “They need to step in and say A) what you’re perceiving isn’t the case, and B) keep your thoughts to yourself.”
Dealing with Work
Navigating chronic illness at your job can be risky business. Unsupportive coworkers may complain that you get special treatment, extra time off for doctor appointments and flares, or a lighter workload. Some may even grouse that you’re faking it to get all of those extra benefits.
Leah N., a nurse who has AS, doesn’t think her coworkers really understand the toll that chronic fatigue takes on her. “If I don’t rest and recover adequately, I can’t be there for my patients as a nurse, and their lives are in my hands — and brain! I will call in sick if I don’t get enough sleep, because an exhausted nurse is worse than a drunk one.”
On the other hand, some arthritis patients risk their health by pushing themselves past their limits so their coworkers don’t think they’re dogging it. The problem is, then colleagues think your pain is fake. “I would put 110 percent in at work then go home and crash and be unable to move, which they wouldn’t see of course,” says Mariah R., who has PsA. “So they all doubted me.”
Omayra E., diagnosed with AS, says her coworkers give her that “here she goes again” look when she grimaces. “Even when I feel horrible I smile at them and say ‘good morning, I’m fine.’ Then I go to the bathroom and cry. They don’t understand how bad I feel physically and emotionally.”
Coming out as having a disability at work can be scary, even though the Americans with Disability Act (ADA) affords several important, crucial protections.
When applying for a job, you are not required to disclose that you have a disability, but the employer is allowed to ask if you are able to perform the particular job. Once you get the job, you are not required to tell your boss, coworkers, or HR department that you are ill.
“I didn’t want to tell my coworkers but I finally had to because they kept genuinely asking if I was okay when I apparently was not,” says Rene F., who has PsA. “I have a very physical job and if I cannot do my job I would have to find other employment. I love my job.”
Understandably, you have to be able to perform your job to keep your job. That’s why you may want to inform HR; it just depends on your particular situation, like how often you might need to go to the doctor, if you need special equipment, like a standing desk, or extra breaks to stretch.
Though many states have laws that allow employers to fire employees for any reason they want, according to the ADA, you can’t be fired for having a disability. If you suddenly have problems doing your job (and your employer meets certain criteria), if you provide documentation of your illness, they have to provide “reasonable accommodations” to help you carry out the essential function of your job. That could mean allowing you to work from home or switching up your responsibilities, for example.
That’s why if your boss is giving you grief for “faking” your illness, it’s important to know your rights. “One time my boss said, ‘Are you sure it’s just not in your head?” I’ll never tell another boss again because of that,” says RA patient Charlie P.
“My former boss used to tell me that I didn’t have arthritis because my hands weren’t deformed,” says PsA patient Misty D. “Twelve years later and now one is!”
Gloria B., who has PsA and works in catering, says, “My old boss didn’t believe me. She said ‘I’ve got a friend with arthritis and she never missed work.’ I was so pissed at her I asked if her friend had a body that attacked itself like mine!” She now works for another catering company where the boss is more sympathetic.
Workplace discrimination is a problem that most of us with chronic illness have faced to some degree at one time or another, says Virant.
“Try to find a situation where you have a compassionate boss, somebody who does get it,” she says. “We have to try to make ourselves visible and say, ‘We are here and this is what we live with.’”
It’s difficult to find meaningful work that doesn’t require long hours, she adds. “That’s a shame. It’s often all or nothing. To have work that one can do on a part-time basis is fantastic but it’s hard to come by. But work is good for people. People who can’t work are more prone to depression.”
Dealing with the Doctor
One of the most frustrating situations is when health care providers accuse us of faking or exaggerating our pain. The opioid epidemic has admittedly played a role in this. Doctors are getting increasingly tougher about doling out pain medication.
Amanda A., who is 28, went to the ER for an ankylosing spondylitis-related issue. During the visit, Amanda says the physician assistant asked her multiple times who diagnosed her with AS, with disbelief in his voice. “He had me in tears and kept insinuating I was there for painkillers. I finally stood up for myself and told him that it is never okay to treat a patient the way he was treating me and told him to leave my room and not come back.”
Some providers downplay their patients’ pain, and this is an especially common experience for women. “A doctor told me I didn’t have an inflammatory arthritis and that he believed it was anxiety and in my head,” says Jamie S., who has PsA. “I had to really push for a diagnosis.”
Angela Z., who has PsA, was furious when one doctor downplayed her fatigue, claiming, “breastfeeding is very fatiguing.” She says another dismissed her hand pain, claiming, “How am I supposed to know if your hands are deformed? I didn’t see them before they looked like that.” She went to a rheumatologist who told her hand deformities like that don’t happen for no reason. “Vindication.”
A new rheumatologist was very patronizing to PsA patient Jamie P. She was looking for a new doctor closer to home but she says he doubted her from the minute she stepped in his office. “He talked rudely to me, as if I were making it all up. He looked at my skin and said he didn’t see any psoriasis. I’m like, ‘Well you’re not going to see it on me as bad as I once had it because I’m on biologics.’ He grabbed my hand and looked at my nails and said, ‘I don’t see any pits in your nails!’” she recalls. “I was flabbergasted. Then he told me he was taking me off my biologics and starting me on methotrexate. I was so mad. I said, ‘I don’t think so!’ You’re not going to take me off a medication that works for me to put me on one I’ve already taken in the past and failed.”
When your doctor doesn’t believe you are in pain or have other symptoms, “get a new doctor,” says Virant. “There’s no excuse for it.”
The Bottom Line: You’re Not Faking It
You know your truth. So it shouldn’t matter if someone thinks you’re faking it. You know you’re not.
“I have been put in a box of what people think I should be doing because I have RA,” says Kaecy W. “I must be a liar if I’m out helping my daughter with 4H or taking her to swim lessons. I do the best I can and what I do with my life is none of their business. I just choose to no longer let this disease run my life. I will run the show.”
“It’s is a sad world when people would think you would lie about something so serious,” says RA patient Saba M. “I only entertain those that at least try to understand; otherwise I have no words for them.”
You can show people articles and studies about your disease — and if that doesn’t work, show them the door.
If you need validation, find at least one person who knows what you’re going through. That can be a real-life person, it can be someone you meet on social media. There are tons of great Facebook groups dedicated to RA, PsA, and AS, and everyone there will believe you because they are going through it, too. “Finding even one person who gets it can go a long way,” says Virant. “You deserve to be seen. Your experience is real and valid.”
Until you find support, do the best you can. “If you need to cry, cry. If you need to rest, rest,” says Tone A., who has RA. “It is your life and you are the one dealing with it, so tell them to kiss your ass and keep doing you!”