Rheumatoid arthritis (RA) is difficult to understand unless you have it.

It’s nearly impossible to describe it in a way that people without it will understand. You can tell people how it impacts your life; you can show people its effects, but you can’t always make them ‘get’ it.

What people should know about RA.

1, When you’re dealing with RA, you’re not just dealing with pain and discomfort

2. RA is an auto-immune disease, meaning instead of your immune system fighting off infection, as it ought to, it actually attacks the cells that line your joints

3. Consequently, an RA flare isn’t simply something you can grit your teeth and get through

4. When you’re having a bad day you’re mentally exhausted and your willpower is weakened. So when friends say join us for a night out, and you say No, you’re not deliberately being anti-social, physically you just can’t manage it

5. RA has no cure

6. Yes, there are things you can do to mitigate the effects of RA, everything from prescription medicines to changes in lifestyle, but it might never get better and that’s not an easy truth to acknowledge

7. RA is not osteoarthritis!

8. Osteoarthritis is the wearing away of the protective cartilage at the ends of bones. All joints are possible targets but most commonly it affects hands, knees, hips and spine

9. When osteoarthritis affects a joint it doesn’t ever move off it

10. RA, on the other hand, likes to roam… so, today the pain of RA can be in your knees. But next week while your knees may be great it’s now too painful to hold a knife and fork or to lift a coffee mug

11. All advice on how to cope with/manage/lessen the pain and impacts of RA is appreciated (heaven knows a sufferer wants to find something that works). But it just adds insult to injury when the person offering the advice refuses to understand when it doesn’t work (when it works very well for someone else)

12. We are all different. What works for one, whether medications, dietary changes, exercise plans, supplements, positive thinking or adapted equipment, may not work the same for another – and there isn’t one of us who wants to feel bad because we have disappointed a well-intentioned friend or adviser

What not to say to someone with RA

1. Do not offer your best wishes and sincere hope that the person will feel better soon

• Don’t be sympathetic and tell that person how sorry you are that their life is so unfortunate

• Don’t tell that person what they should do to become better

• Don’t say “it could be worse, you could be suffering from……”

• Don’t say, “But you look so well”

• Don’t say “Hang in there, you’ll get through it”

What to say to someone with RA

1. Say, “I’m heading to the shops, can I pick up anything for you?”

• Say, “I’m sorry you can’t make it tonight, but I’m glad you’re taking care of yourself”

• Say, “I’d like to know and understand more about what you are going through. What articles or websites do you recommend?”

• Say, “I heard this/I saw this and it made me think of you and smile”

• Don’t show pity – show compassion – show empathy

Conclusion

RA is horrible to experience and hard to understand unless you are the one who is suffering.

It is not a criticism of a person who does not understand. It is unreasonable to expect that a non-sufferer will fully “get” it. But what is reasonable to expect is for a person to show support and sensitivity. Every RA sufferer is different. But all share a need and a fair expectation that others around you – family and friends – will try to friends and family – will try to empathize and understand.