When most people hear the word “arthritis” they probably picture a grandma who has trouble knitting or maybe a grandpa who walks with a cane. Most people don’t picture a mother chasing after her children, or a teenager at the mall with her friends, or a baby learning how to walk. But the reality is that all of these people can have forms of arthritis.
Confusion about the different types of arthritis, who is affected, and how it impacts their daily lives can often lead people to make well-meaning but ill-informed comments. Here is a list of eight things not to say to someone living with rheumatoid arthritis – and some facts you can offer in response if someone says these things to you.
(1) You are too young to have arthritis.
The most common type of arthritis, osteoarthritis (OA), occurs when the cartilage between joints breaks down over time. Because this type of arthritis often worsens with age, it has created the stereotype that only old people get arthritis. But the reality is that of the 50 million Americans who have been diagnosed with some form of arthritis, two-thirds are younger than 65 and 300,000 of them are children. I was diagnosed with rheumatoid arthritis when I was 25 years and I have met children who were diagnosed with juvenile arthritis as toddlers.
(2) My grandmother (or great aunt or other old person I know) has arthritis too.
More likely than not, your grandmother has osteoarthritis (OA). While potentially painful and life-altering, OA is not the same as autoimmune forms of arthritis such as rheumatoid arthritis (RA) or juvenile arthritis (JA). Autoimmune arthritis occurs when a person’s own immune system mistakenly attacks healthy joints. These types of arthritis are systemic, lifelong conditions with no cure. Personally it does not make me feel any better when someone tells me about a relative who has a completely different condition than I do!
(3) But you don’t look sick!
Autoimmune forms of arthritis, like rheumatoid arthritis (RA) and juvenile arthritis (JA), are often invisible illnesses. A person may not show any outward signs of living with daily pain and fatigue. But someone who looks perfectly healthy may still be experiencing flare-ups of inflammation and pain or dealing with fatigue. Like other chronic diseases, RA and JA may fluctuate in severity from day to day, but it never goes away completely. I always try to put on a brave face for the world, but that doesn’t mean I’m not in pain on any given day.
(4) Have you tried a gluten-free (or vegan or casein-free or nightshade-free) diet?
Unfortunately, treating RA is just not as simple as eating or not eating a certain food. While some people have found that following a particular diet may improve their RA symptoms, there is no scientific evidence to recommend any particular type of diet to treat RA. So while alternative diets are certainly worth a try, there’s no guarantee that they will help. For example, I tried being gluten-free for six months without any impact on my RA symptoms.
(5) Have you tried glucosamine (or chondroitin sulfate or other natural supplement)?
Just as there is no particular diet that will cure RA, there is no natural supplement that is guaranteed to help with RA symptoms. In fact, most supplements that are generally recommended for arthritis – such as glucosamine or chondroitin sulfate – have only been studied in terms of their impact on OA, not RA. I personally take a fish oil supplement because there is some evidence that omega-3 fatty acids may help naturally decrease inflammation in the body. I figure this is worth a try, but it certainly has not cured my RA.
(6) You take too much dangerous medicine.
RA is a serious autoimmune condition, and many of the immunosuppressant drugs prescribed to keep RA under control do in fact come with serious risks and side effects. However, there are also serious risks associated with having RA that is not properly treated. If not treated, RA can lead to permanent joint destruction as well as damage to other organs. Unsolicited criticism directed towards a person with a serious medical condition may make it more difficult for them to take the medications necessary to prevent long-term damage. I always tell people who are critical of my treatment choices that I carefully discuss the benefits and risks of my medications with my rheumatologist, who is an expert on the subject.
(7) Now is the best time to have RA.
While this is factually true – RA treatment has indeed improved dramatically over the past few decades – it really doesn’t make it any easier to be diagnosed with RA today. Being diagnosed with RA is still a lifetime burden, particularly if you are diagnosed at a young age. I had a really hard time with this comment, particularly when I was first diagnosed. At the age of 25 it didn’t feel like a good time to have RA to me!
(8) You just need to exercise more.
While exercise is certainly an important part of managing any type of arthritis, when RA flares exercise can be difficult, painful, or even impossible. Exercising during a flare may even lead to additional joint damage. When RA is controlled low-impact strengthening exercises can be very helpful, but no amount of exercise is going to cure RA. We do the best we can to stay active when our bodies allow, but the reality is that it just isn’t always possible.
Are there any other things that you think people shouldn’t say? Please share them and how you respond!