Coping With Being Judged by Others Because You Have RA

by Lene Andersen, MSW Patient Advocate

Rheumatoid arthritis (RA) is increasingly becoming an invisible illness. On one hand, this is wonderful — severe deformities and disability are becoming a thing of the past. On the other hand, this can also create additional challenges as you navigate life with this condition. “Seeing is believing,” the saying goes and when people can’t see that you have a chronic illness, they may not believe you. Not only are you dealing with pain and fatigue, but possibly also the judgment of others.

Doctor disbelieving a patient.

Doctor disbelief

“I was diagnosed by my GP (general practitioner) as being too fat; I needed to exercise more. When I couldn't manage that, I was diagnosed with an anxiety disorder. It was years of feeling I was losing my mind … before I had the blood test that showed textbook RA.” — Kathy

Many people with RA have trouble getting a diagnosis. This condition is hard to pin down and family doctors may not know the intricacies of RA, such as that you can be seronegative. Get a second, third, even ninth opinion if you have to.

Child having her wrist wrapped by a doctor.

RA can hit at any age

“You can’t have RA because you’re too young!” — Marcella

One of the biggest misperceptions about RA is that it is the same as osteoarthritis (OA). RA is an autoimmune disease, whereas OA is “wear-and-tear” arthritis, often happening after an injury or more commonly as you age. This may be the reason that younger people with RA are often told they are too young to have the condition. This is not the case. Autoimmune arthritis can affect anyone, even a baby.

Exhausted woman sitting on a couch.

Systemic impact of RA

"RA has attacked my lungs only. That doesn’t show on the outside, so guess what ... I shouldn’t have any problems because it’s not visible. But I am TIRED like never before!" — Betty

RA is a systemic illness that affects not just the joints, but also internal organs, the vascular system and more. This can be difficult to understand for others who see only that you look fine. Having to explain over and over again that your entire body is fighting inflammation can be exhausting.

Distressed man sitting on the floor and looking at his phone.

Bullying is real

“Friends said Lupus patients do not get chemo and I was faking. Lupus attacked my heart and I had to have a pacemaker. The cruel things they have said and posted is horrid.” — Amy

Bullying isn’t just for children. When someone doesn’t understand, they may be dismissive or even mean in their comments to you. Chronic illness is famous for showing who your real friends are. It can be a painful experience but often, those left are real gems.

Handicapped parking space.

Judging a disability by its visibility

“Quite often when I park in the handicap space at the stores. I've had everything from rude notes left on the windshield, to verbal assaults.” — Cheryl

There is a common belief in our culture that a disability requires mobility aids, such as a wheelchair, crutches, braces, and more. Other individuals may wish to protect services for people with disabilities and mistakenly attack you. Consider using a visual cue, such as a cane to protect yourself.

Scared woman hiding in an office cubicle.

Workplace harassment

“I have been judged, discriminated, and harassed by my employer and fellow employees.” — Pierre

When you have a chronic illness, work can be extra important for the sake of benefits and having the money to pay for meds. When harassment happens at your job, it can jeopardize everything. Most workplaces have an anti-harassment policy to protect a number of groups, including those with a disability. That means you. If you have been harassed or discriminated against, contact human resources for help.

Woman putting on makeup in the mirror.

Pretty rough

“’You can’t possibly have RA because you look so pretty and put together!’ As if one must look disheveled and unattractive.” — Martii

Most people’s experience with illness is limited to having the flu. This can make it hard to understand that someone who has a chronic illness and feels terrible will still make the effort to look nice. Yet, we do — spending your life in pajamas and with unwashed hair just makes you feel more sick. Looking good can make you feel a bit better.

Family members arguing on a couch.

Family foibles

“I have been labelled as rude by my in-laws instead of sick.” — June

Judgmental reactions of your family can be among the most hurtful — these are the people you trust the most. It may help to remember that such behavior tends to be based in their own reaction to your illness, as well as other family dynamics. Perhaps they are afraid for you, worry about the impact it may have on them, or are simply in denial. If talking doesn’t help, you may want to limit how much you engage with them.

Woman choosing which direction to go.

RD or RA?

“RD, I prefer. It is a disease in my body.” — Deanne

Can the name of the condition make people understand? Some people in the community have begun to refer to RA as rheumatoid disease (RD), which emphasizes the systemic nature of the condition and removes the often-confusing term ‘arthritis.’ Whether this will catch on in the medical community and literature and result in an official change of the name remains to be seen.

One orange butterfly standing out in a group of blue butterflies.

Coping with judgments

Judging others who are different seems to be an unfortunate human trait. Whether your difference is because of race, gender, the clothes you wear or a chronic illness, there are people who won’t understand and some who will be downright cruel. Your experience in dealing with other judgments can help you face reactions to your RA. Support from the RA community and family and friends who understand can be vital in helping you ignore ignorant opinions.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.