1. We Don’t Know What Causes Rheumatoid Arthritis
These days, much more is known about RA, especially the process that leads to developing the disease - a combination of a genetic predisposition, abnormally autoimmune response and environmental or biologic triggers. However, how it all comes together and why it comes together in some people, yet not in others, is still unknown.
2. Rheumatoid Arthritis Can Be Difficult to Diagnose
As many autoimmune diseases, RA can be difficult to pin down in the beginning. Symptoms can vary, come and go and tests can be inconclusive. For instance, approximately 20 percent of people who have RA are seronegative, which means the blood test for RA Factor is negative. Many family physicians are not aware of this, which can delay referral to a rheumatologist and treatment.
3. There Are Different Levels of Intensity of Rheumatoid Arthritis
Rheumatoid arthritis is generally divided into three levels: mild, moderate and severe. People who have mild RA have lower inflammation levels, perhaps less joints affected, less pain and their disease may be well-maintained with a fairly low dose of one of the DMARDs (disease modifying antirheumatic drugs). On the other end of the spectrum, some people have severe RA in which many or most joints are affected and which require higher doses of more serious drugs.
4. Rheumatoid Arthritis is a Chronic Illness
Once you have the disease, it doesn’t go away - RA is a chronic illness that will be with you for the rest of your life. Despite the infomercials on late night TV or what your aunt’s hairdresser’s cousin’s boyfriend’s father says, it cannot be cured. You may go into remission - spontaneous remission is rare, but does happen, many pregnant women go into remission during their pregnancy until approximately 6-8 weeks after birth, and when your RA is well-managed by medication, you can experience a drug-induced remission.
5. The Prognosis Has Changed for the Better
I have had RA since 1966 and started using a wheelchair at age 16. Recently, I have had two doctors on separate occasions tell me that if I got RA today, I wouldn’t end up in a wheelchair. A diagnosis of RA is no longer a guarantee that your joints will be deformed and you will lose significant levels of ability, and this change in prognosis is due to the development of the biologic drugs like Enbrel’s, Humira, Orencia, etc. When RA is treated early and aggressively and you respond well to the medication, there is a very good chance that you will be able to live a relatively normal life.
6. RA Pain isn’t Minor
Every time I see one of those commercials for an over-the-counter painkiller for “minor arthritis pain,” I want to throw something at the TV. RA pain is often very much not minor and it is important to find a doctor who will support the goal of you being as pain-free as possible with prescription painkillers or anti-inflammatories in addition to the DMARDs.
7. Rheumatoid Arthritis Can Make You Tired
There’s a well-known fatigue factor with RA - inflammation makes you tired and pain makes you tired. Having RA pain means that you spend more energy, not just on every movement you make, but also as you cope with being in pain. It’s important to get enough rest and think about where you spend your energy.
8. Most Medication Side Effects Are Manageable
One of the most common side effects of RA meds, whether it’s DMARDs or painkillers/anti-inflammatories, is G.I. upset such as queasiness and gas. Sinus problems are a common side effect of immunosuppressants. Most of these can be managed fairly easily. There are more serious side effects that may mean you need to switch to another medication - keeping an open dialogue with your doctor will enable you to stay on top of your health.
9. Rheumatoid Arthritis Can Give as well as Take
Part of getting to a point where you can focus on getting back to your life is dealing with the grief of the loss of health and the loss of, for some, being able to be as physically active as they used to be. But RA doesn’t just take, it also gives - having challenges and coping successfully makes you stronger and better able to bounce back from setbacks.
10. You May Have To Change the Way You Do Things
Changing the way you do things, whether it is taken the elevator instead of the stairs, asking your 10-year-old to open jars or swimming instead of running marathons don’t change who you are. You are still you, with all your charms and quirks.
11. You’ll be OK
Life goes on because that’s what it does. In the beginning of your life with RA, you’ll have to find a way to coexist with the disease as your new partner and although it may not feel like it now, you will get there. One of the miraculous aspects of human beings is our ability to adapt and you will, too. Once your RA is well controlled, you’ll be able to get back to focusing on your life first with the disease in the background where it belongs.
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You can read more of Lene’s writing on 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.