Life After Being Diagnosed with Rheumatoid Arthritis

  • There you are, a diagnosis of rheumatoid arthritis ringing in your head and a prescription for scary sounding medication in your hand. You been told that this disease cannot be cured, only controlled and that it will be with you for the rest of your life. It's enough to make anyone dizzy. Will it take away your dreams and swallow up your life or is it possible to live around it?


    The short answer is no, sometimes and absolutely.


    Living with RA adds extra challenges to navigating your life and sometimes, you get a little lost. When how you feel varies from day to day your focus narrows, shrinks to right now and your plans and dreams become something you'll do later, when you feel better. The problem with this approach is that all of a sudden, it's 2 years later and you're still feeling as if you're treading water while you wait to feel stable enough to get going. How do you break the cycle and live your life with - or despite - RA?

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    Step 1: Accept
    It's going to take a while before you wrap your head around the fact that you really, truly will have RA for the rest of your life, but once you do, it will be easier for you to step out of grief and move on with your life. Hope is important, but hoping that you will be cured will keep you stuck in place - although big strides are being made in research, at this time there is no cure for RA. Shifting what you hope for to something that is attainable - such as remission with the help of some of the truly excellent meds that are now available - will help you frame your life in a way that nurtures success.


    Acceptance doesn't mean that you're giving up - it means that you stop railing at the gods, stop focusing on what you don't have. Acceptance means looking at what you do have: your life.

    Step 2: Dream
    This is the part where you get to daydream, take a big step back and play with ideas. Is there something you've always wanted to do, but deemed impractical or unrealistic? Have you been thinking about switching careers? Do you want kids, a dog or to find yourself a farmhouse where you can raise llamas? When Barbara Walters interviews celebrities, she sometimes asks what do you want in 5 years that you don't have now? It's a good question - it gets to the heart of your innermost dreams and can help guide your plan.


    Step 3: Assess

    Creating your future is like building a house from the ground up and that means laying the foundation. For those of us who live with a chronic illness, a solid foundation means maximizing our health. To assess what you need, take a look at your situation as objectively as you can. Is your RA under control or do you need to change your medication? Are your doctors good team players or do you need to find someone else? Is it possible to improve your level of function through better pain control, surgery or seeing a physical therapist about an exercise program? Do you have the emotional support you need, both for the good times and for the hard ones - would counseling be helpful, are you connected to other people would live with RA, does your family need more information about RA so they can support you? Is your ability to work affected, do you need accommodations to help you work better or to think about another type of job?


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    Once you've laid the foundation, it's time to plan the house, i.e. your future. What do you need to pursue your dream? If you want to change your career, check out What Color Is Your Parachute? and I'd Rather Be Working. If you want kids, Suzie Edward May's book can be a terrific part of planning a pregnancy with RA. Whatever you dream, there's information on the Internet and in your local library about how to get to where you want to be.


    Step 4: Build
    Don't wait until you get better to start creating your future. Your life happens now, as well as three years from now and what happens in three years will be connected to what you do now. They say that a journey of 1000 miles begins with one step, so take that step, regardless of how small it is. Keep putting one foot in front of the other, breakdown your being green into smaller, attainable goals that you can handle with your current energy level and remember to look at the big picture. Not on what you did this week, but what you will do in the next 52 weeks. If you do a little every day, sometimes even just sitting on the couch plotting your next step, it adds up by the end of the year. Remember that the tortoise won the race, not the hare.


    Step 5: Live
    Having a goal is a good thing, but don't forget to enjoy the journey. Life is what happens now and you need to build in some flexibility to allow for the unexpected. Not just unexpected health issues that put a spanner in the works, but for the unexpected wonderful. Sometimes, your path veers off and you discover another dream you like better. The key is to keep going, getting back on the horse that threw you, to continue to discover who you are and where you want to be. To live instead of treading water.


    What do you want in five years that you don't have now?


Published On: January 12, 2011