“You have rheumatoid arthritis,” your doctor says.
Being diagnosed with a chronic illness can be a relief because finally, you know what’s wrong. It’s also scary and overwhelming - a new lifelong companion has been found, one you didn’t invite and don’t want. You are inundated with information, prescribed an alarming amount of medication and have no idea what kind of impact RA will have on your life. Is it any wonder your head is spinning? Over time, you’ll develop ways of coping that work for you. To get you started on the road with RA, here are five suggestions that I’ve found useful in living well with your new companion.
_You are the I in Team. _ Over the years, you will meet many doctors, nurse practitioners, physiotherapists, occupational therapists and the list goes on. These medical professionals are your care team and every team needs a leader. That leader is not your doctor, that leader is you Your medical team are your consultants, recommending treatments and medications, suggesting solutions to problems, but you’re the one who has to make the choice that’s best for you. Research the suggestions on the Internet or at the library, then talk to your doctor. At first, you might feel uncomfortable taking up more time or asking questions, but the bottom line is that it is your body and your life. The more you know, the better you’ll cope.
Better Living through Chemistry. One of the most unsettling things about being diagnosed with RA is the very serious medications your doctor may recommend. When you research these drugs and start feeling woozy at the long list of nasty side effects, keep in mind that all possible side effects must be listed, no matter how few people have experienced them. Discuss the pros and cons with your care team and consider the impact untreated RA has on your life. Big problems need big solutions and, unfortunately, big solutions have more risk than smaller solutions. Only you can decide if the risk is worth it.
Staying Ahead of the Pain. Living with RA also means that you will add a number of different painkillers to your medicine cabinet. Don’t try to be tough and wait until you can’t stand it anymore before you take painkillers. You’re in a race where you have to stay ahead of the pain and the longer you wait with taking the meds, the more difficult it becomes to catch up. Taken as prescribed, medications are a tool to help you get back to what’s important: living your life.
Introducing Your New BFF. It’s normal to feel betrayed by your body when you’re diagnosed with a chronic illness - all of us experience periods of depression, anger and grief. However, the angrier you are at your body, the tenser you get and tension means more pain. Treating your body as your new Best Friend Forever will make your life easier - the two of you are in it together, and after all, your body is doing its best to get you through each day.
Listen to your body - it will tell you when you’re doing too much, when you need to rest and when you need to cancel plans. And when you have to cancel, try not to feel bad - it’s not your fault, it’s the disease. Pace yourself and set attainable goals. For example, if you’re working in the garden, stop after an hour, even though you don’t feel tired yet. If you stay too long, you may end up with increased pain levels for days, whereas working well within your limits means you can do it again tomorrow and the next day. Of course, there are times when doing something fun despite the possibility of paying for it later is worth it. And remember the wise words of Carrie P. Snow: “no day is so bad it can’t be fixed with a nap”. Napping helps, as does meditation, yoga and tai chi.
People who need People. When we don’t feel well, are depressed or in pain, we often have the impulse to turn inward and hide from the outside world, much like an animal licking its wounds. But when you don’t feel well, are depressed or in pain, it is more important than ever to turn outward and connect to others. Nourishing relationships with those you love will keep you connected to the outside world and to a source of strength. Although your family and friends support and love you, they may not understand what you’re going through. Talking to other people who have RA can be incredibly helpful - they’ve been there, they are there and can share their experiences and ways of coping. Reach out to groups and agencies in your area - many are listed in the phonebook. You can also find a community of people like yourself on the Internet in places like HealthCentral and other online forums and message boards. Don’t be afraid to ask for help - for instance, this site has a very active Q&A section where members of the HealthCentral community share their knowledge and support each other.
We humans are very good at adapting to change and you will, too. Having RA will slow you down sometimes, but it won’t stop you. It will be a part of your life, but it will not be all of your life.
What else do you want to talk about? Relationships? RA on the job? RA when you’re a parent? RA with friends? RA with faith and religion? Let us know! E-mail Joy Buchanan, your site producer, at jbuchanan @ THCN.com about ideas and topics for future installments of “RA: The Beginner’s Guide, by Lene Andersen”
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.