We understand that living with rheumatoid arthritis (RA) can be challenging – especially when there are so many stigmas and stereotypes about what it means to live with the condition.
This article will help inform and educate you about the realities of living with rheumatoid arthritis as well as how to deal with some of the most common misconceptions about RA.
What is rheumatoid arthritis?
Rheumatoid arthritis (otherwise known as RA or arthritis) is a condition that causes inflammation and pain. The pain caused by rheumatoid arthritis can affect more than just the joints in your hands.
RA is an inflammatory and autoimmune disease. An inflammatory illness is when a part of the body sometimes swells and heats up, and an autoimmune illness is when the immune system attacks the body – RA can be a combination of both and can affect different parts of the body in different ways.
According to the Arthritis Foundation, some of the symptoms and early signs of RA may include:
- Stiff joints, tenderness, swelling, or stiffness that lasts for six weeks or longer
- Morning stiffness that lasts for 30 minutes or longer
- Pain in more than one joint
- Small joints (wrists, certain joints in the hands and feet) are typically affected first
- The same joints on both sides of the body are affected
Many of these symptoms often come together in what’s known as a flare-up.
Official government statistics estimate that 24% of adults in the USA have arthritis and 2.3 million people are diagnosed with the condition in Europe every year. However, there are so many myths, stereotypes, and stigmas surrounding the condition and how it affects people who live with it. All of this misinformation often leads to certain stereotypes about people with RA.
Busting common RA myths
It’s important to acknowledge why stigmas and stereotypes can be harmful. A stereotype or stigma usually exists because people have an oversimplified understanding of something: for example, that RA only affects joints.
Many people living with RA experience symptoms outside of the stereotypes. They may find that others overlook their symptoms or assume they’re not as serious because they don’t have the stereotipical symptoms of the illness. This is just one example of how stereotypes can have a negative impact on people living with the condition.
So, what are the most common stereotypes surrounding rheumatoid arthritis? It’s time for some myth-busting.
Myth #1: Only old people get arthritis
We chatted to Emily, who was diagnosed with RA at the age of thirteen. She had this to say:
One misconception about rheumatoid arthritis is that only old people can get it. I was diagnosed with RA at the age of thirteen years but had symptoms for around a year before.
You can read our full interview with Emily right here.
While people with RA are often older, it can severely affect young people too. Some research suggests that as many as 8 in 100,000 people aged 18-34 experience RA. Younger people like Emily can often struggle to come to terms with their own condition when everyone around them is holding on to misconceptions.
I did sometimes feel embarrassed using a wheelchair or walking stick at the age of thirteen because it felt like everyone was staring at me, and some people actually were. I could feel people looking at me as if to say, ‘you don’t need that; you look fine.
Some of the most harmful kinds of stereotypes are those which undermine the condition or suggest that it is the fault of the person living with it.
Myth #2: All arthritis is the same
A lot of people think that arthritis is all the same. Strange knobbly hands and stiff joints on old people. This is not the case.
Arthritis actually has different types and each type can produce different symptoms which affect different people in different ways.
Here are the three most common types of arthritis:
- Osteoarthritis – normally starts in an isolated joint and occurs when the smooth cartilage joint surface wears out. Osteoarthritis is the most common form of arthritis with an estimated 32.5 million cases in the US.
- Rheumatoid arthritis (RA) – this is an autoimmune disease that often attacks several joints at the same time. RA is when the immune system gets confused and attacks the lining of the tissues around your joints. This often causes swelling and pain. Over time, RA can cause physical deformity. According to the American College of Rheumatology, this is the most common type of autoimmune arthritis and affects over 1.3 million Americans.
- Psoriatic arthritis (PsA) – is also an autoimmune disease; however, PsA causes the body’s immune system to attack not just your joints but also your skin.
Each form of arthritis has its own list of symptoms and everyone experiences the condition differently.
Not all of the symptoms of the different types of arthritis are visible. Remember, just because you can’t see it, doesn’t mean that someone doesn’t have it.
Myth #3: All joint pain is RA
This is not true. There are many conditions – like tendonitis, osteoarthritis, bursitis, and Lyme disease – which can cause joint pain.
It’s important to treat such pains seriously and get them properly checked out by a medical professional.
Going around telling people you have arthritis or RA when you’ve got mild discomfort in your joints might not help the cause of people with arthritis to get others to take their condition seriously.
Myth #4: Cracking your knuckles causes arthritis
This is one of the most common and most misleading myths about arthritis. There is no proven evidence – scientific or otherwise – to prove that cracking your knuckles causes any form of arthritis.
It’s true that cracking your knuckles excessively can cause other injuries, but there’s no proof that it causes arthritis. And as we know from myth #3, not all joint pain is RA!
One of the problems with this myth is that it might suggest that someone has arthritis because they did something wrong. To be clear: it is not someone’s fault if they have arthritis.
On a side note, if you do have RA or osteoarthritis which affects the joints in your hands, you should avoid cracking your knuckles as it might aggravate some of the pre-existing symptoms.
Myth #5: Arthritis is always worse in winter
People also used to believe that banging pots and pans would ward off evil spirits. But as scientific knowledge spreads, silly misunderstandings like these eventually disappear.
Some people report that pain and symptoms, like tender joints, worsen during cold, rain, and low atmospheric pressure periods. Others say that flares occur when it is humid or hot outside. Unfortunately, studies into the effects of weather on rheumatoid arthritis are sparse.
Everyone’s experience with rheumatoid arthritis is unique to them and triggers and symptoms depend on the individual. You can read more about seasonal factors and RA here.
There is little scientific evidence that the weather can worsen or better the symptoms of rheumatoid arthritis (or any of the other forms of arthritis). And lack of scientific evidence should not be substituted with stereotypes.
What to do if you’re struggling to cope with the stigmas and stereotypes
If you’re living with rheumatoid arthritis, there are ways that you can tackle the effects that stereotypes and stigmas might be having on you.
Try practicing the following three tips:
- Be mindful in your daily life
- Understand the condition better
- Talk to someone about it
When you’re living with a chronic condition, practicing daily mindfulness can have a huge impact on your overall quality of life.
The National Institute of Mental Health recognizes that people with chronic illnesses – like RA – are more likely to experience mental health problems. That’s why it’s important to make sure that even if you are living with unpleasant symptoms, you continue to practice mindfulness and appreciate the joys of life.
We asked Tuukka, a coach in the Sidekick RA program, what’s something he wished people knew about managing their RA:
I wish people knew that, besides a good medication plan and regular support from your healthcare team, your own lifestyle choices can help manage disease symptoms.
For many people, mindfulness can have a huge impact on their overall quality of life. You can read more about the benefits of mindfulness and stress reduction right here.
There can be many emotional and mental health implications to living with arthritis. As we learn from Emily’s story, it can impact your ability to maintain a steady social life or limit your independence:
I couldn’t do much with my friends anymore socially. My condition meant that they’d have to come over to my house or I’d have to go to theirs.
If I did actually end up going somewhere with them it meant I’d have to take a different journey. They would usually take the bus or train. I couldn’t do this because of the walk to and from the station. My mum would have to drive me, which doesn’t seem like a huge deal, but I still felt I missed out in some way.
Another good idea is to try planning your days in advance. That way, you can prepare yourself for situations that may cause you distress. This could help to minimize stress and reduce the chance of your RA acting up.
Being mindful is an important part of learning how to accept a chronic condition. At first, Emily found it very difficult to accept the new limitations in her life, especially at the age of thirteen. In her interview with Sidekick, she said:
Most days, my mum had to help me get dressed, help me in and out of the bath as the handrail wasn’t enough, wash and brush my hair, and even help me walk around the house. Now, at the age of 24, sometimes I still have to get her to help me with these things. Luckily, I’ve learned to accept my condition and my limitations now.
It’s important to look beyond your symptoms at the many joys and wonders of life. We know this can be tricky at times, but your RA Sidekick is there to help.
Understanding the condition
A lot of people living with RA have a fear of the unknown because they don’t know how their condition will progress. Understanding your RA and your triggers can help you live better with your condition and its symptoms.
Francis Bacon said that ‘knowledge is power’. This is definitely true when it comes to fighting off the stigmas and stereotypes associated with RA.
If you understand your condition and what’s happening to your body, you’re less likely to be affected by what other people tell you – whether that’s putting ice on your hands, cracking your knuckles, or banging pots and pans.
Get to know your condition so you can confidently set the record straight for others.
Talking with someone
Luckily, I have a great support network – including my family, friends, and fiance – who are able to empathize with me and listen to me when I need to talk about things.
Family and friends can be a calming cure for stress when you’re dealing with your RA. It’s important that those around you also understand the realities of your condition so that they can provide you with the support you need.
By explaining to family and friends the nature of your condition, you’re giving them the tools they need to support you in a sensitive, caring, and loving way. It’s really important for friends and family to fully understand what you are going through.
As well as family and friends, it’s important to make sure that people at work, or anyone else you’re frequently in contact with, are aware of how your condition might affect you: whether that’s physically, emotionally, or mentally.
Looking beyond friends, family, and colleagues, there are also countless RA support groups online (and in person) where you can meet people going through a similar experience. You can find support groups on Facebook and other social media networks. Talking with people who are living through the same experience can be both incredibly empowering and comforting.
If you’re living with rheumatoid arthritis, why not explore some of our other RA articles? Discover how to manage your condition at home and on the go or check out these inspiring interviews with real people living with RA.
Life can definitely be cruel, but it can also be beautiful.