Living well with RA needs a box full of tools addressing different aspects of life with a chronic illness and together, take you where you want to go. If you’ve just been diagnosed, the following are five important items for your toolbox:
Get a Good Rheumatologist on Your Team
You and your rheumatologist will be together for a long time and it’s important you find someone you can trust. Consider meeting with a few doctors to discuss their treatment approaches and get a sense of whether they take the time to listen to your concerns and provide the amount of information you need to leave the office feeling safe, cared for and optimistic. Once you have selected a rheumatologist, be prepared that just as with any other people in your life, developing an effective relationship with your doctor takes time, patience and good communication.
When you have a chronic disease, you will interact with a number of people who help you manage your disease – doctors, nurse practitioners, physiotherapists, people in charge of possible funding sources, etc. These are members of your team, but you are the leader who pulls all the information together. It is your body and your life and, therefore, you make the decisions based on information provided to you by experts in their field. Remember that these are people who get paid to provide a service, so don’t feel intimidated or anxious about asking questions.
Get the Good Drugs
A rheumatoid arthritis diagnosis used to come with a prognosis of deterioration and joint deformity, having a severe impact on your life. This is no longer the case – treatment options have changed significantly in the past decade and rheumatologists have become more aggressive in their approach to treatment. This has resulted in a much better prognosis and it’s very possible that you’ll be able to lead a fairly normal life.
Treatment consists of a two-pronged approach: DMARDs and painkillers. The term DMARDs stands for Disease Modifying Anti-Rheumatic Drugs, such as Methotrexate, Plaquinil and the biologics (e.g., Enbrel and Humira), which suppress your rheumatoid arthritis by suppressing parts of your immune system. The idea of being on such serious drugs can be frightening, but without treatment, your joints can become severely damaged, which will limit your ability to live your life. Another tool that will help you get back to what’s important is good painkillers. Although your pain levels should decrease dramatically when your RA is suppressed, it is likely that you will still have some degree of pain. Don’t tough it out. Living with chronic pain is like being in a race – the goal is for you to stay ahead of it so you can focus on what you need to do in your day.
Get a Counselor
Getting a diagnosis of a chronic disease is a shock and adjusting will take time. It is normal to go through a grieving process in which you ask “Why me?” and mourn the loss of health. It’s a lot to handle on your own and seeing a counselor or therapist can help you work through the feelings and develop coping mechanisms that will work for you for the rest of your life, both with RA and the other curve balls life throws your way.
Adjusting to your disease will also be a challenge for the people who love you and if you are part of a couple, your disease will affect that relationship as well. Your partner may be afraid of hurting you or may not understand the impact of pain and medication on your energy levels and it can be beneficial for the two of you to have a few sessions of couple’s counseling to help find ways to keep your relationship strong.
Get a Community
Your family and friends may be very supportive, but unless they have a chronic illness, there are aspects of your life and your emotions they cannot understand. Finding people who know what you’re going through can be incredibly comforting and empowering. Others who have experience in living with RA can be valuable sources of information and tips and tricks on how to cope. Online communities, such as Health Central, are easy to get to and enable you to “meet” people from all over. You can read the archives of posts from Health Central experts and community members, ask questions in the Q&A section and write SharePosts of your own to share your experiences, frustrations and joys. There are many other communities out there and a quick Google search will help you find them. As well, there may be “real life” support and information groups offered in your community – a good place to start your search is through The Arthritis Foundation.
Getting a diagnosis of RA can feel like the end of the world. It isn’t. Yes, your life will be different, but it’s still life. You still have to go to work or school, raise your kids, be with your family, love and laugh. Although you can expect to spend the first six months to a year being very focused on your disease, getting the proper treatment and adjusting to everything, there will come a time where the RA spends most of the time where it belongs: on the back burner.
Having a chronic illness is part of what you are, it isn’t who you are – you are exactly the same person as you were before the diagnosis. As life with RA progresses, you may find that this disease doesn’t just take, it gives as well. Although you may lose some people in your life because they can’t handle the disease, the ones who stay and the ones who come after are solid, trustworthy people who see you and love you for who you are. And within you, living with a chronic illness gives strength, resilience, a deeper understanding of what truly matters and the ability to let go of what doesn’t. Your life won’t be the same, but it may get better than it was before RA.
Have you just been diagnosed or know someone who has? Start with our Rheumatoid Arthritis Beginner’s Guide to learn what you need to know and find out what to do next.
Read more from Lene Andersen at The Seated View.
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.