Rheumatoid disease is more descriptive than rheumatoid arthritis. These words capture its systemic nature and that it can affect organs such the heart, lungs and eyes. RA, by contrast, is too easily confused with osteo arthritis. Lots of people, upon hearing I have arthritis, say, ‘Oh, I have a bit of that in my knees’, or ‘My mum has that’. Questioning them further, it turns out that they have osteo arthritis. When they find out what RA/RD really involves, people often look surprised. Many people don’t know the symptoms and the reality of what it’s like living with RA/RD. I’m pleased that the National Rheumatoid Arthritis Society’s RA Awareness Week 2014 (16th-22nd June) has ‘invisible disease’ as the focus, as its hidden nature is a huge part of the problem when it comes to public perception.
Until recognition improves, I’m going to continue using both rheumatoid arthritis and rheumatoid disease in conversation. Media coverage of RA/RD should focus on the fact that drug remission is possible, although it may take years, and that lots of people can successfully manage their condition with the right treatment and support network (from friends, families and health professionals). Having said that, it’s also important that health professionals tell RA/RD patients about potential side effects from medication but this shouldn’t be done in a ‘doom and gloom’ way which makes people too scared to take the drugs. The key message is that the benefits of taking the medication outweigh the risks. I had no idea what would happen to my joints if I continued without drugs (I had a 7 month hiatus from them), because no one had ever properly explained what could happen and I didn’t know I had erosive RA. That all changed when my GP said ‘Your joints will crumble if you continue this diet-only approach’. I also think that talking to others going through it is invaluable, whether in person or online. Sharing stories and encouragement has really helped me and I’m sure it’s helped others too. In an ideal world, there would be no need for an RA/RD Awareness Week, as everyone would know what it is, how its treated, and that remission is a distinct possibility.