Rheumatoid Arthritis: It’s Your Job
“I know you want to get back to work, but your full-time job right now is to get healthier,” I’ve said countless times as an occupational therapist working with people in rehabilitation centers. Usually, the people I said this to were active, go-getters in life prior to their illness or injury. I know all too well how hard it is to be a good sport when your body gets in the way of your life plan.
I have a secret life in my daydreams where my energy level allows me to actually live the life I want, but my reality involves first asking my body for permission before I do anything. Over the years I’ve lived with this unpredictable disease I’ve learned one thing really, really well: in order to live well with rheumatoid arthritis, you must take it seriously every day. You’ve been given a job to do and the earlier you learn how to do your job well, the better you will fare in the long run.
I learned this lesson well because I’ve spent years ignoring my own advice and my body has paid the price. As I said the words above to my clients I was pretending that I had the energy to work full-time myself. I didn’t. No one wants to live with a painful, debilitating disease with no known cause or cure. No one deserves this; no one should have to handle this. But fighting against your reality will do nothing but harm.
Once I accepted that my true full-time job was taking care of my over-taxed body, I was able to make the life adjustments I needed in order to have a better quality of life. I had to sacrifice many of the measures of “success” that our society has decided on, but I gained success in other, more important areas-my health and well-being.
I know I’ll be learning how to do the job of living well with RA for the rest of my life, but here are the job skills I’ve learned so far:
Education and Continuing Education
Rheumatoid arthritis isn’t simple- at this point in time we still don’t know what causes it, but we are figuring out how best to manage it. The more you can learn about RA, health, chronic pain, and research that is being done to improve treatment, the better your decisions will be. It can be hard to find good information but people with arthritis have a number of good resources to draw from including the Arthritis Foundation. When you are educating yourself I highly advise that you use trusted sources. If you want to educate yourself about how to research well I recommend listening to Research tips from Stuff You Should Know. This podcast is a good resource for weeding out bad science and finding good information.
Move your body Every Day
This is hard to do when your body is screaming at you but it is so, so important. Exercise keeps the muscles and tendons that support your joints strong, it releases endorphins, (our bodies natural painkillers,) it keeps your metabolism running and burns calories which keeps weight down; in short there is no down side to exercise.
However, you need to learn to exercise the right way in order to maintain the integrity of your joints. When I was in college, and hadn’t learned the job skills of RA, I had the brilliant idea to use the rowing machine at the gym. Little did I know that I was shredding one of my tendons slowly because of the joint damage I had in my wrist, and less than a year later that tendon popped and I was having emergency surgery. Now, I choose my exercise more wisely and have found that Tai Chi, biking, walking, Pilates, and gentle yoga, are much more sustainable and enjoyable. Every day I check in with my body and ask what it needs. Lately, gentle walks are the answer and even though I won’t be winning any strength or agility contests, I know that my body is thanking me.
In today’s world nothing seems simple, and diet definitely falls in this category, especially when you live with a chronic disease like rheumatoid arthritis. Part of your job when you live with RA is figuring out what works best for you. I do think it is worthwhile to determine if there are any food allergies going on which can increase inflammation but in general I think the sanest way to approach diet is to eat an anti-inflammatory diet and alter this according to your unique needs.
Including Stress Management into your daily routine
Do you learn to swim when you fall into the sea or before you get into the boat? This is how I feel about learning the skills of stress management- you have to learn them BEFORE you need them so that when stress hits you, you have the tools to manage it. For me stress is a disease trigger and as a result I’ve spent a lot of time dealing with this one. Of course I learned this after stress kicked my butt, so do what I say, not what I’ve done!
Being Mindful of your Emotional Health
By now, the mind/body connection is not in question. Chronic pain will wreak havoc with your emotions- this is a guarantee, so exploring ways to improve your emotional health is a must do when you have RA. I've found that as I've gotten older I've learned how to communicate the harder aspects of my health issues with my loved ones and this has helped me immensely. Pain is a lonely experience, but having compassion for yourself and finding supportive people you can talk with when you are feeling down, will help to bolster your health. And don't hesitate to consult with a mental health professional if you feel this would help.
Gathering a medical/ health support system and regularly consulting them
In order to live well with chronic disease it is imperative to find a health care team that you trust. Request referrals to health care providers such as physical and occupational therapists, psychologists, social workers, and orthopedic specialists. Remember, that they are there to make you feel better, not worse, so if after therapy you find you are flaring speak up and problem-solve with your provider so this doesn't happen again. I recommend exploring alternative/complementary care as well which may include massage, acupuncture, or naturopathy.
Getting enough Rest
This can be challenging when you are a working parent, student, or someone who lives a modern life in general! Even when I have all the time in the world to rest, actually allowing myself to rest has been a challenge for me because I grew up in a very hardworking family, and I don't want to be “lazy” or “unproductive.” I know I'm not unique, many of my RA cohorts feel the same way. What I've realized, however, is that at times,rest can be the most productive thing you can do; by resting when your body needs it, over time you will accomplish much more.
The other issue I know I have with rest is that pain can prevent true rest- when I'm in pain, often I can't find a comfortable position, no matter what I do. This is when I use calming music, meditation music, or guided visualization. I've found that by getting as comfortable as possible and letting my mind relax, I feel more rested even with pain.
Making Friends with your Body
We all can be so mean to ourselves, hard on ourselves, and never happy with the body we were given. I believe whole-heartedly in self-honesty, but not self-recrimination. One thing I know for sure about my body is that it is doing it's best for me every day all day. With this in mind, especially when it comes to living well with rheumatoid arthritis, when I find myself being negative about my body I switch my thinking and ask myself, “What would my best friend say about this situation?” Usually the answer is a lot different than the what I had been thinking and I always end up feeling better.
Remember You are still You!
If you are feeling overwhelmed right now with all the job skills RA requires, remember this: you are still you. RA will rob you of many things but it will never take away your personhood. In fact, by practicing these job skills, it will strengthen you and make you better in all areas of your life.
What Job Skills Have You Learned Along The Way With RA?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?