15 Things Not to Say to Someone With RA
How to talk about RA
When most people hear the word "arthritis," they think of achy joints and old age. Even though that is true for the most common condition, osteoarthritis (OA), rheumatoid arthritis (RA) is very different.
RA is a serious autoimmune disease that attacks the lining of the joints and other body parts.
If you know someone with RA, you may try to sympathize or offer advice. But be aware that some sentiments may do more harm than good.
Here are 15 things you should drop from the conversation.
Those drugs are too dangerous
Yes, many of the immunosuppressive drugs prescribed to RA patients come with serious side effects, including increased risk of infections, liver and kidney damage, and birth defects.
"The drugs are serious drugs," says Eric L. Matteson, MD, MPH, professor of rheumatology at the Mayo Clinic in Rochester, Minn. "But the disease is a serious disease."
Left untreated, the immune system will attack and destroy the joints, and damage other organs as well. RA can considerably lower a patient’s life expectancy if he or she skimps on or skips treatment.
My grandmother has it
It’s more likely that your grandmother has osteoarthritis, which affects 50% of people over 65. OA is caused by years of wear and tear on the joints, rather than by the body attacking itself.
"That’s a totally different disease," says Sara Nash, a 32-year-old woman with rheumatoid arthritis in Baltimore, Md. "Having someone talk about their relatives with OA doesn’t make you feel any better."
In fact, the average age of onset for RA is between 30 and 50, but it can be diagnosed in the teens, 20s, 30s, or at any age, and has been seen in children as young as a year and a half.
You need to exercise more
Exercise is an important part of managing any type of arthritis. Still, when RA flares up, exercise can be difficult and painful, if not impossible, and may even lead to more joint damage.
"If someone can’t make it down the street, then telling them to exercise is like a big middle finger in their face," says Nash. Once the flare is controlled,
simple workouts such as walking are helpful not only for the joints but also to strengthen bones. And even though exercise can help manage the disease, it can never cure it.
Aren’t you feeling better yet?
Like other chronic diseases, RA may ebb and flow in its severity from day to day, but it never goes away. Over decades it is likely to get worse, and eventually people with RA may become disabled and may have to quit their jobs. As the disease progresses, some people will need multiple joint replacements.
Patients can only manage their RA, and asking if they’re feeling better can just reinforce the fact that they’ll never be 100%, even if the medications are working well.
Have you tried glucosamine?
Glucosamine is a molecule that helps make up the type of cartilage found in joints. There is some evidence that taking this supplement can help alleviate pain for people with osteoarthritis.
For RA, the case for taking glucosamine is even weaker.
"It simply doesn’t work," says Dr. Matteson. However, glucosamine is completely safe, he says, so patients who feel that the supplement helps with pain can keep taking it—but it does not replace any other medications or offer long-term benefit.
Maybe you need an antidepressant
Living with a chronic condition does not mean just dealing with the disease day to day; it also means dealing with the uncertainty of what lies ahead.
Not only can coping with RA cause depression, but inflammation associated with the disease can affect brain functions like mood, says Dr. Matteson. Antidepressants can be prescribed for patients for whom depression has become a problem. And although they might also help to reduce pain, antidepressants do not work to control the RA itself.
But you look fine
Just because a person is managing his or her RA doesn’t mean he or she is not experiencing flare-ups of inflammation and pain, or that the RA is "getting better." Young adults and even children can have RA, and although they look perfectly healthy, they may be anything but.
"Don’t judge a book by its cover," says Nash. Many illnesses don’t show on the outside. Still, that doesn’t mean they shouldn’t be actively treated. "Even though I’m managing it," she says, "there is no cure for RA. So until there is, I will always have to manage the ups and downs of a chronic disease."
You take too much medicine
Autoimmune diseases like RA are different for everyone, and require individualized care plans. Nash says she sometimes swallows up to 10 pills a day. "It does feel like too much," she notes, "but every single one of them has been prescribed by my doctor."
Offering unsolicited medical advice to a person with a serious condition is not only hurtful, it also can be detrimental. RA requires various strong medications to keep the disease under control. It’s hard enough to stick to a tough medical regimen without the criticism.
You need to change your diet
Unfortunately, treating RA is not as simple as cutting out or adding in a certain food. While some people with RA may have foods that help their symptoms, there are no hard and fast rules that apply to all patients.
The only dietary concerns are foods, such as grapefruit, that can interact with RA drugs. Discuss these matters with a rheumatologist.
Treatment is a personal decision, and some people, including Nash, do not get RA relief by avoiding certain foods. "For me, eating is something I enjoy, so severely restricting my diet would lessen the quality of my life," says Nash.
It’s all in your head
Many RA patients put off going to see the doctor because they take a "wait and see" approach or because a family member or friend has told them they’re imagining things.
But most experts think delaying diagnosis even by a few weeks is hazardous, and the sooner patients are treated with the right drugs the greater the chances of slowing down or stopping joint destruction. "We talk about the first weeks and months as the window of opportunity" to stop damage, says Dr. Matteson.
Pain isn’t something people can see. Still, that doesn’t mean this largely invisible illness is any less serious.
Losing weight might help
For both RA and OA, being overweight can add more stress to the joints and compound the problem. However, extra pounds can be the result of medical treatment. Many RA patients are prescribed corticosteroids such as prednisone, which can tamp down immune reactions but also cause weight to balloon and raise blood sugar.
Classic side effects of such drugs are moon face (yes, that’s a medical term) and truncal obesity, or weight gain around the middle.
Some people do need to lose weight to help their joints, but that’s a conversation for the doctor’s office—and it should stay there.
You’re too young to have arthritis
Half of the people with RA are under 48. Many are diagnosed with the disease in their 20s and 30s. "I have it, so I’m obviously not too young," says Nash, who was diagnosed when she was 29. "It’s so frustrating to have a disease that’s associated with people more than twice your age."
Not only is it illogical to tell someone they’re too young to have the disease, it also means you’re confusing RA with OA, a very different ailment.
Now’s the best time to have RA
Yes, treatment has improved in the past decade. Dr. Matteson says that RA patients who are on the right medication and who do not develop serious disease outside of the joints, such as in the lungs, have virtually a normal life expectancy. Still, that doesn’t make it easy.
"It is frustrating when, in response to telling someone you have RA, they say that now is such a great time to have RA," says Nash. "I feel like the best time to have RA is never."
Although outcomes are much better, RA is still a lifetime burden, particularly for those who get it young. It means extra decades of managing the disease.
Let me know if I can do anything
This clearly isn’t the worst thing you can say to someone with RA. You want to help, and that’s the message you're conveying.
However, it can be difficult for someone to ask for assistance on top of controlling RA.
"A lot of people don’t understand how limiting chronic pain is," says Nash. Instead, Nash says, specific offers, like helping with grocery shopping or bringing a meal, are more meaningful than an open-ended one that puts the burden on the patient to fulfill.
I know someone with RA and they have it worse than you
Well-managed RA doesn’t mean that it’s a more mild case. Trivializing the disease is one of the most serious problems Dr. Matteson sees. "It makes it more difficult for the patient," he says, "because all of these things are being said to them."
The comments are also hurtful because they can discount or dismiss your experience with RA. “Having RA isn’t a contest,” Nash says. "I am grateful that I’ve responded as well as I have with little permanent damage. But I’m not cured."