What do I wish I had known at diagnosis? This started out as a short response to a seemingly simple question and ended up here, I guess I always figure why use ten words when you can use hundreds!
1. That there is a fantastic, amazing and committed online support community. That these strangers would become my home, my family, my friends. There is an amazing bunch of people out there, living #chroniclife just as I do, and they are all passionate about providing support, information, safe places to chat and vent, and somewhere to go at 3am when the regular world is asleep.
2. That getting the diagnosis is not the end, it’s the beginning. Just after I very first joined a wise RA’er told me that this is a marathon, not a sprint. Three years later I get it.
3. To take all the RA stuff seriously, but learn to laugh at it at the same time. It’s very easy to get bogged down under it all, so spot the funny moments and treasure them, they do help! (Getting stuck in a hotel bath springs to mind!)
4. That everyone’s RA is different. There are similarities within recognised parameters, but you may suffer some things badly and others not at all. That doesn’t make you odd or weird, we all feel this differently
5. That #selfcare is the single most important thing you’ll learn to do. You can’t pour from an empty bucket, so look after you properly, then you can be there for others. Putting even family before yourself is a mistake, I always think of the airplane oxygen rule, you first, children next.
6. That it’s perfectly possible to have even severe RA and live your life with love and joy and hope. You’ll find your way, and there are others who are here to help, always.
7. That it’s OK to scream and rant and rave and be angry too. We all do it, venting is welcome! Letting off steam occasionally is I believe an essential part of processing and accepting your diagnosis
8. That no one can tell you how a medication will work for you. Not your rheumy, not your doctor and not us. Unfortunately RA treatment is trial and error – many people hit their magic med first or second time and probably never join online groups because they don’t need them. Others will have meds fail them over and over, or provoke allergic reactions. The only way to know what will work for you is to try it with your rheumys support and guidance.
9. That you will find your way through this. You’ll learn how your RA behaves, what helps and what doesn’t, when you need to rest and when you need to work through. It’s not a quick or easy process, but I promise you will get there 💙