If you know someone with psoriatic arthritis (PsA), you may try to sympathise or offer advice. But some sentiments may do more harm than good.
How to talk about PsA
When most people hear about someone having "arthritis," they think of painful joints and old age. This is often true for a person with osteoarthritis (OA), but inflammatory arthritis (such as PsA) 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 PsA, 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 PsA can cause side effects, some of which are potentially serious. However, if PsA 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 PsA to continue taking their medications. If they are experiencing side effects they should 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 PsA. 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 PsA which is an autoimmune disease where the body is attacking itself. In fact, PsA can occur at any age.
Telling someone, especially if they have PsA 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.
3. You need to exercise more
Exercise is an important part of managing PsA. However, if the person is experiencing a flare in their PsA, 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 PsA 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 a person with PsA does 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 PsA, and like many other chronic diseases, PsA may ebb and flow in its severity from day to day.
People with PsA 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 PsA.
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 may help alleviate pain for people with osteoarthritis. However, there is very little evidence that it helps for a person with PsA 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 PsA are more likely to experience mental health issues than a person without PsA. So, if you notice that the person with PsA 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 PsA doesn’t mean they are not experiencing flare-ups of inflammation and pain, or that their PsA is "getting better." Young adults and even children can have PsA, and although they look perfectly healthy, they may be experiencing pain, stiffness or fatigue.
Remember, PsA 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 PsA will be different to the next person with PsA 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 PsA 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 PsA, a healthy, balanced diet is a sensible component of their treatment plan.
10. It's all in your head
Many people with PsA 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.
This is unhelpful, as the sooner the person commences treatment for their PsA, the greater the chances of slowing down or stopping damage to their affected joints.
11. Losing weight might help
For people with PsA, 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. Many people with PsA are 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
Psoriatic 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 psoriatic arthritis with osteoarthritis, which are two very different diseases.
13. Now's the best time to have PsA
Yes, it is true that treatments have improved in recent times and with the use of disease modifying medications many people will be well managed and are less likely to experience complications. However, PsA 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 PsA is a chronic 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 PsA. You want to help, and that’s the message you're conveying.
However, it can be difficult for someone with PsA 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 PsA and they have it worse than you
Even though you may be trying to make the person with PsA look for the positives with their condition, this type of comment can be taken the wrong way and may be unhelpful.
Remember PsA 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 PsA can get worse and challenging times may be just around the corner.