If you know someone with axSpA, you may try to sympathise or offer advice. But be aware that some sentiments may do more harm than good.
How to talk about arthritis
When most people hear about someone having "arthritis," they think of painful joints and old age. This could be true for a person with osteoarthritis (OA), but inflammatory arthritis (such as axSpA) is a different medical condition.
Inflammatory arthritis is an autoimmune disease, where the person’s own immune system attacks the lining of their joints and sometimes other parts of the body.
If you know someone with axSpA, you may want to help them by offering them advice and support. However, sometimes even the best of intentions can do more harm than good.
Here are 15 things you should drop from the conversation:
1. Those medications are too dangerous
Yes, many of the medications prescribed to manage arthritis can cause side effects, some of which are potentially serious. However, if arthritis is left untreated, the disease will cause lasting damage to the person’s joints and reduce their quality of life.
If you want to help, you should encourage the person with arthritis to continue taking their medications and if they are experiencing side effects to discuss it with their doctor, so that they can adjust their therapy to achieve the best possible outcome.
2. My grandmother has it
This may be true, but it is more likely that your grandmother has osteoarthritis (OA) which is a different condition to axSpA. Although OA is often described as ‘wear and tear’, this is not an accurate description. Osteoarthritis is now thought to be the result of a joint working extra hard to repair itself. This is different to axSpA which is an autoimmune disease where the body is attacking itself.
Telling someone, especially if they have axSpA at a young age, that your relative has OA is unhelpful and that despite your good intentions, may make the person think you simply don’t understand what they are going through.
In fact, axSpA can occur at any age.
3. You need to exercise more
Exercise is an important part of managing axSpA. However, if the person is experiencing a flare in their axSpA, it can be difficult and painful to exercise.
Regular exercise can help build endurance and strength, preserve muscle and normal joint motion, minimise bone loss, and improve pain control. So, encourage the person with axSpA to exercise, but also understand if on some days, they simply may find it too difficult and will need to rest. Also be aware that the exercise should not cause increased pain and they should never push their joints past their normal range of motion.
4. Aren't you feeling better yet?
There is no cure for arthritis, and like many other chronic diseases, axSpA may ebb and flow in its severity from day to day.
People with axSpA should be aiming to achieve the best possible control of their condition. So, constantly asking if they’re feeling better may unintentionally reinforce the fact that they’ll never be free of their arthritis.
5. Have you tried glucosamine?
Glucosamine is a molecule that helps make up the type of cartilage found in joints. There is some limited evidence that taking this supplement can help alleviate pain for people with osteoarthritis. However, there is very little evidence that it helps for a person with axSpA and it is not a recommended therapy.
6. 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.
People living with axSpA are more likely to experience mental health issues than a person without axSpA. So, if you notice that the person with axSpA has a low mood or not their normal self, be supportive, ask are they okay and if you are still concerned encourage them to seek help from their doctor or organisations like beyondblue. This will be more helpful than suggesting they need an antidepressant.
7. But you look fine
Just because a person is managing their arthritis doesn’t mean they are not experiencing flare-ups of inflammation and pain, or that their arthritis is "getting better." Young adults and even children can have arthritis, and although they look perfectly healthy, they may be experiencing pain, stiffness or fatigue.
Remember, axSpA is a chronic condition. Some days the person’s symptoms will be well controlled and other days they may not be.
8. You take too much medicine
Each person’s arthritis will be different to the next person with arthritis and so will their management plan.
Offering unqualified medical advice to a person with a serious condition may not only hurtful, it also can be detrimental to the person’s health. Rather than questioning the person’s use of medications, you can help by encouraging them to continue to use their medications as recommended by their doctor even when they are feeling well.
9. You need to change your diet
Unfortunately, treating axSpA is not as simple as cutting out or adding in a certain food to the person’s diet. However, some people may notice that their symptoms improve when they fast or eliminate certain foods from their diet, leading the person to believe that an allergy or sensitivity is contributing to their arthritis. However, this may have occurred by chance and so it is important to involve a dietitian before the diet is modified.
For most people with arthritis, a healthy, balanced diet is a sensible component of their treatment plan.
10. It's all in your head
Many people with arthritis 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.
This is unhelpful, as the sooner the person commences treatment for their arthritis, the greater the chances of slowing down or stopping damage.
11. Losing weight might help
For people with arthritis, being overweight can add more stress to the joints and compound the problem. However, extra kilograms can sometimes be the result of their medical treatment. People with axSpA may be prescribed corticosteroids such as prednisone, which dampen down the immune system but can also cause the person to put on some weight.
Some people do need to lose weight to help their joints, but that’s a conversation for the doctor’s office.
12. You're too young to have arthritis
Arthritis can occur at any age. Many people are diagnosed in their 20s and 30s and it can even start in preschool children.
It is not logical or helpful to say to say to someone that they are too young to have the disease. It probably means that you are confusing axSpA with osteoarthritis, which are two very different diseases.
13. Now's the best time to have arthritis
Yes, it is true that treatments have improved in recent times and with the use of biologic disease-modifying medications (bDMARDS) many people will be well managed and are less likely to experience complications. However, axSpA is still a lifetime burden, particularly for those who get it when they are young. So even though you are trying to help by being positive, remember that axSpA is a chronic life-long disease, that fluctuates, and some days are going to better than others.
14. Let me know if I can do anything
This clearly isn’t a bad thing to ask someone with arthritis. You want to help, and that’s the message you're conveying.
However, it can be difficult for someone with arthritis to ask for assistance especially if they are experiencing a flare in their condition and they are in pain and are fatigued.
What can be more helpful is to be specific in your offering of assistance, for example ask if the person needs help with the with grocery shopping or bringing them a meal.
15. I know someone with axSpA and they have it worse than you
Even though you may be trying to make the person with axSpA look for the positives with their condition, this type of comment can be taken the wrong way and may be unhelpful.
Remember axSpa is a chronic condition for which there is no cure. And as control can fluctuate over time, this type of comment may remind the person that their axSpA can get worse and challenging times may be just around the corner.