Your Life, After Diagnosis

Posted on 18 February 2010

by Michael DuVall

A diagnosis of rheumatoid arthritis can be devastating, sometimes requiring major changes in lifestyle. But there is life after RA…

I would have rather the doctor told me I had cancer.

For me, rheumatoid arthritis meant my paternal grandmother. As I was growing up, I watched as Grandma slipped from cane to walker to wheelchair and finally, to bed. Towards the end, she couldn’t walk, write, or even brush her own teeth. Few people grieved at her funeral; the people who really cared for Grandma were just relieved that her suffering was over.

I believed RA meant enduring a pointless life filled with pain, devoid of joy, and ending with a eulogy titled: “She’s Better Off”. Now, of course, we know about new medications, exercise, adaptive techniques, rehabilitation—treatment that wasn’t available for my grandmother. I am—and I plan to remain—an active, productive person. But when first diagnosed, I was devastated. My expectations for myself and for those around me were completely skewed and as a result, I made a lot of bad decisions regarding my treatment. With all the benefit of five years of hindsight, here’s what I would suggest to anyone who’s just been diagnosed.

All Hail Cleo, Queen of De-nial

It is not uncommon for people confronted with traumatic changes in their lives to experience Dr. Kubler-Ross’ “Stages of Dying”—denial, anger, bargaining, depression and acceptance. Of course, RA in and of itself is not fatal, but often RA does represent a “death”, or at least an end, to certain dreams and expectations. When I was first diagnosed, I was an interpreter for the deaf and a novice fencer. I believe that the shock of illness combined with the loss of my career and favorite activity contributed to a yearlong bout of denial (hence, the title) in which I ignored my doctor’s advice and tried to “heal” myself through herbs and other ineffective methods.

For many of us, RA represents the death of our self-image and we must allow ourselves time to grieve for who we were. You may experience all or none of the “Stages”, but go ahead and mourn your loss. The sooner you resolve these feelings of loss, the sooner you’ll be able to focus on the abilities you do have…and even develop new abilities!

My Doctor, My Partner

The relationship between a rheumatologist and his patient is a commitment that often outlasts the average marriage…so choose your doctor carefully. Chances are you will be seeing each other at least four times a year; if you don’t get along, it can cause undue stress and even affect your recovery. A good doctor combines competence with courtesy, makes certain that the patient understands both the diagnosis and the treatment, and answers questions in laymen’s terms.

By the same token, listen to your doctor. Keep track of specific symptoms (e.g. exactly how long does morning stiffness last?) and let him know when certain situations trigger flares. Some therapies require patience—Plaquenil, for example, takes six months to become effective—so don’t be so quick to give up on a certain treatment. Above all, never suddenly stop taking medication without consulting your doctor first.

Also, unless you have a very mild form of RA, please consider seeing a rheumatologist. While a family practitioner does receive some training in rheumatic diseases, there are at least 170 different kinds of arthritis alone and dozens of types of synovitis (RA). Along with four years of medical school and three years of internal medicine, a rheumatologist must complete two to three years of training in rheumatology to become board certified and is then required to participate in regular continuing education. RA is a serious disease—entrust yourself to the care of a specialist.

Nobody Understands

You’re right…they don’t.

Your family, your friends, your coworkers, even your spouse will not understand. And, despite the efforts of some wonderful people who genuinely want to understand what you’re going through, they never will. It can leave you feeling alienated within your own house. Most people underestimate the endurance chronic pain requires; fewer comprehend its loneliness.

However, there are people out there who have learned to deal with arthritis and who will be able to empathize with you better than your family, your friends or your doctor. Check your local hospitals and community centers for an arthritis support group. DO NOT ISOLATE YOURSELF! Studies show that people who keep community ties are happier and healthier.

Keep Informed, Not Obsessed

An informed patient is a good patient. The more we know about how to care for ourselves, the better the chances for our recovery. And with the Internet, we are able to educate ourselves as never before on new drugs, clinical trials, studies and alternative treatments.

So what’s wrong with that?

Nothing…except when RA becomes the focus of our lives. Chronic disease is a greedy god and it demands our attention. But when we give it too much attention, when we tell people that we have RA within five minutes of an introduction (something I’m still occasionally guilty of), when we spend hours scouring the internet for information, bulletin boards and chat rooms to discuss our RA, when our conversations turn increasingly to our latest symptoms, then we’re turning RA into a lifestyle.

Keep informed, stay up-to-date, know all the latest techniques and treatments available…and then live your life in spite of RA, not because of RA.

Believe in Something Bigger Than Yourself…Even if You’re Not a Believer

I understand why some cultures consider disease to be a demon or the work of demons. I’ve been known to refer to RA as the “great malefic god” because sometimes it seems as if RA is bigger than me, more powerful than me and—in a word—relentless. It’s a terrible thing, feeling controlled.

That’s why I believe that some form of spirituality is important. When you are feeling besieged (one of my many terms for having a flare), it’s liberating to be able to believe in something bigger than yourself, something more powerful and enduring than RA. I believe that all religions and beliefs (or lack thereof) are valid; I personally do not belong to a church. I don’t think it matters, though. Whether you celebrate God or Jehovah or Allah or the Great Mother, whether you believe in the teachings of Buddha or Yogananda or Zoroaster, or if you believe only in what you see and hear but still take the time to close your eyes and listen to the sound of your breathing, you are—for a moment—believing in something greater than yourself. For just a moment, you are escaping your troubles and pain and in so doing, triumphing over RA.

It Will Get Better

You will learn how to deal with RA. Over time, you’ll find the right medication, you’ll learn adaptive techniques, and you’ll discover—through trial and error—your limitations and your abilities. Right now, Your Life A.D. may seem dismal, but one day—sooner for some, later for others—you’ll find your equilibrium. A whole day will pass and you’ll realize that you didn’t even think about being sick…that you didn’t feel sick, even if there was some pain. It doesn’t mean that you’ll never think about RA; it doesn’t even mean that you’ll ever truly get used to it. But that day will mark the first day you prepare yourself to live in spite of RA.

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