Living as a Young Woman with Rheumatoid Arthritis
Copyright 2012 Heather Dowdy
I’m all out of spoons.
Living with the systemic disease of Rheumatoid Arthritis (RA) is not only physically crippling, but mentally and emotionally crippling as well. Today, I am feeling fairly crippled in all three areas.
A few hours of organizing in the garage to prepare for an upcoming event has left me reeling in pain as well as mentally and emotionally exhausted and depressed. Afterward, I came in, fell to the bed and cried a while. Sometimes that is the only thing I can do. Lying there, I felt so alone in this sickness, as many of us with RA often do. Don’t get me wrong: I have the ultimate support, love and care of a man who is so good to me, as well as many caring friends and family members, but at the end of the day—unless you suffer from RA—it is hard to understand what it is truly like to be held prisoner by an arthritic body. That is especially true when you’re a social, enthusiastic and typically active 34-year-old woman who happens to feel trapped inside the body of an eighty-year-old.
And that paradox makes RA a strange disease. On the outside, you seem like everyone else. You don’t look sick; therefore, people don’t tend to acknowledge that you’re sick. After all, they can’t see the disease. Inside, my own immune system is waging war against my joints, muscles and organs, pounding away like a chisel inside every joint and bone, sometimes reducing an otherwise happy individual to tears; but on the outside, I’m any other thirty-something woman who should be able to go out dancing without crippling pain, grocery shop without total exhaustion and open a bottle of water first thing in the morning without the aid of my spouse. Many friends and colleagues know that I have RA, but despite my attempts to explain the disease, many still associate it with general aches and pains and assume I can function like a normal individual.
I am not alone. It is estimated that 1.5 million Americans have RA, and of those, 75% are women. What’s more, a 2010 study released by the American College of Rheumatology suggests that the RA rate in women is rising sharply after nearly four decades of steady decline—an increase of nearly 50% from 1995 through 2004—and while the incidence in men remains largely unchanged.*
Growing up with JRA
The girl on the outside has never matched the girl on the inside. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at 18 months old, after my parents’ concern over my scream-filled fits prompted them to seek help from my pediatrician. If they tried to change my diaper, I’d scream. If they picked me up, I’d scream. If I couldn’t sleep, I’d scream. As it turned out, I was in so much pain that just about anything made me cry.
I wasn’t like a lot of other kids. I couldn’t play sports, running hurt my joints and I felt tired so much of the time. Instead, I chose to spend my time lost in books, where I was whisked away to other worlds and could live other lives. I found solace in books, and in writing out my feelings. Could growing up with RA have been a catalyst to my career as a writer and publisher? Perhaps. It certainly gave me what many have called an overly empathic nature toward the suffering of any and all creatures, whether human or animal. I know what it is to feel pain, and I cannot bear the thought of another being experiencing it. I try to find the positive in everything, and if there is an upside to RA, it may be that it has given me a great sense of compassion, and helped pave the path that would merge my passion for animal rescue and writing in the form of my career as the founder and publisher of Nashville Paw magazine as well as the executive director of the nonprofit Nashville Paw Foundation.
The Truth about RA
I strongly believe in the importance of focusing on what I can do rather than falling victim to my disease and wallowing in self-pity. It would be easy to do: after all, it doesn’t seem fair to struggle with this disease at age ten, twenty or thirty—but if I have learned anything through this struggle with RA, it is that you have to deal with life on life’s terms.
That said, battling a chronic disease can wear down even the most optimistic nature. While some forms of arthritis affect limited joints, RA is an autoimmune disease that assaults the entire body, including joints, muscles, tissues and organs—and for which there is no cure. Common complications include joint degeneration, muscle atrophy, anemia and nerve entrapment, but is also responsible for damage to the eyes, lungs and heart, including pulmonary fibrosis (permanent scarring of the respiratory tissues) and interstitial lung disease. In fact, up to 20% of deaths in RA patients are caused by lung complications, according to Elinor Mody, MD, director of the Brigham and Women’s Hospital Women’s Orthopedic and Joint Disease Center in Boston.**
She notes, “We call it rheumatoid arthritis, but we should really call it rheumatoid disease… as it causes damage to the entire body.”
And that, specifically, is what makes living with RA so complicated. RA public awareness is not as prevalent as many other diseases, and for that reason, it is largely misunderstood. When people learn that I have RA, they often respond by trying to relate, such as saying, “I understand… my left hand aches when it rains” or “So, I bet you get stiff when it rains.” Most people simply don’t know that RA is a full-on systemic disease that is detrimental to the entire body system.
Good, Bad and Worse Days
As with any disease, my RA gives me good, bad and worse days. On a good day, I have my usual chronic neck and back pain and usually some tenderness and lack of strength in my hands. My hips and knees pop and crack, and I wake up a little stiff. These are the symptoms I’ve been dealing with my entire life, so this is baseline health for me, and I happily cope with it. On a good day, you won’t know I’m sick.
On a bad day—especially during rain and/or cold, or after an extended period of stress or physical work—I add to those symptoms an excruciating throb along the length of my bones and muscles from hips to knees. My shoulders and elbows throb as well, and along with increased back and neck pain, it is difficult to sleep, adding to the fatigue I already feel. In the mornings, I slowly move through a few hours of stiffness before reaching a suitable range of motion. On these days, it is hard to do many of the things I need to do. Walking through a grocery store is incredibly painful, but I do it anyway. Chances are, even if you know me, may not realize that I’m hurting.
A worse day, however, leaves me debilitated. The morning seems unbearable as I struggle out of bed to limp down the hall, pain searing through my body and limbs. With my hands stiff, painful, swollen and weak, I can’t open and close my fingers, much less successfully grip a toothbrush or comb. A deep, continuous pain and stiffness holds my skeletal frame hostage, my joints popping and cracking as I move, making the simplest tasks—such as bending to put on socks or opening a bottle of juice—seemingly insurmountable.
The pain, however, is only half the battle. On days like these, I am overcome with utter exhaustion. The mere thought of making food or running an errand tires me, and as I am quite active by nature, the chronic fatigue depresses me. I begin to feel useless, sad and guilty for not being able to do what others want me to share in. I feel insecure, because hobbling down the hall like I’m eighty does not feel sexy. I feel helpless inside the body that continues to torment me day and night no matter how many pills, vitamins, super foods, heat wraps and hot baths I take.
On a worse day, you will notice a change in me. On a worse day, someone will inevitably ask, “What’s wrong?” to which I can only reply, “I’m just hurting.”
A few years ago, I worked in an office and it never failed that on a worse day, my coworker would say, “Somebody seems grumpy today.” It wasn’t that I was being rude or unfriendly to her, but rather that I wasn’t being my usual fun, cheerful self, and she seemed to take the absence of that good spirit as me being upset about something in particular. When I finally tried to express, one day, that I was in an enormous amount of pain during an RA flare, she chuckled and said, “Oh, we all have our aches and pains… you can’t let it get you down. Chin up, now!”
Safe to say, I was a grump after that. I found myself wishing that she could experience just one “worse day” of RA so that she could understand how belittled her comment made me feel.
After all, when I came to work in a boot after spraining my ankle, she couldn’t stop helping me. “You poor thing!” she’d say. “Let me help you with that stack of files!” I’d smile and say thank you, but what I really wanted to say was that the sprained ankle was a walk in the park compared to the pain I experience most other days—on ordinary days when no one seems to know or care if I have trouble with everyday tasks. But people react to what they can see, and RA is most often an invisible disease. To my coworker, a boot meant, “Heather needs help!” when in reality, the help was most needed (and never came) on the days I was accused of just being “grumpy”.
Talking to others who live with RA, I know I’m not alone in feeling trapped in a catch 22: if I don’t voice my pain, people assume I’m fine and expect normal functioning from me, but if I do voice my pain, I feel like I’m complaining—which is why those of us with RA often choose to tough it out, taking on more than we can physically handle and rarely asking for help. We don’t want to be seen as complainers and grumblers; we don’t want our disease to define us.
The problem is, when we don’t voice the truth of our struggle, nobody knows about it—which means no one can begin to understand it.
The Need for Understanding
I have often felt alone and afraid throughout my disease, and I suppose that is really why I am writing this today: to let those with RA know that you are not alone, and to help those without RA understand. After all, it is one thing to tell someone that you have a disease; it is another entirely for them to understand what that means for you or for their relationship with you. I’ve talked with enough RA patients to know that if there is one thing we all desire (almost as much as a cure), it is to be understood and to be shown empathy from those with whom we share our lives. We’re not playing the victim role and we don’t want special treatment. We are not using our disease as an excuse to do less. We don’t need pity. We do, however, want the people in our lives to have some understanding of what we face each day, to acknowledge our limitations, and to relate to us in our struggle, supporting and encouraging us so that we can continue to fight this lifelong disease that we know is only going to get uglier, harder and more crippling with time.
In return, we want the people in our lives to know we understand that this is difficult for you, too. We know you want to fix it and feel helpless that you can’t. We know you worry about us. We know you love us but may feel frustrated when we can’t clean the house or go to a party or if we’re so exhausted that we fall asleep on the couch the moment we settle in for a movie. Autoimmune disease can be a drain and strain on any relationship, whether it be with a friend, family member or spouse. In fact, the divorce rate among people with RA has been reported to be as much as 70 percent higher than that in the general population.
Kristin Flynn Peters, PhD, a clinical health psychologist and clinical assistant professor at the School of Health Professions at the University of Missouri in Columbia, explains it this way: “As the disease progresses and damage gets to the point of visible physical changes, many people may feel unattractive, and that changes how they relate to their spouse.”*** Despite their attempts to empathize, healthy spouses can also begin to resent their sick partners when they can no longer carry their weight with work and household chores, or when the disease affects their sexual relationship. The same dynamics, however, can be applied to any close relationship involving someone suffering with the disease—which is why honest communication, understanding, patience and compassion on behalf of both individuals is so vital to maintaining healthy relationships throughout the lifelong progression of RA.
The Spoons Theory
As I said in my opening, I am out of spoons today. I will explain this momentarily, but first let me say that this has been a “worse day”. I spend many worse days sobbing in bed and soaking in hot baths, begging for a moment of freedom from pain, accompanied by feelings of despair. From there, I can continue down my path of depression, or I can embrace the pain, accept it for what it is, and focus on positive thinking and positive action. Sometimes I can’t help but choose the former, but today I chose to reach out to share my experiences with the hope that it might make a difference for someone else struggling with disease.
I recently read a great article by Christine Miserandino, who has developed what she calls “The Spoons Theory”. Although Christine wrote this in regard to living with Lupus (a similar systemic disease in many ways), it applies quite well to living with RA.
She explains, “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.” As someone sick with RA, however, the choices I make daily directly impact my outcome. Some days, I might be able to take a long walk with the dogs and do laundry when I get home—but maybe not if I also need to run errands and buy groceries. On a worse day, I likely can’t do any of those.
In a nutshell, Christine explains it this way: as someone living with a systemic disease, you begin the day with a set number of “spoons”. It might help to imagine them as spoonfuls of energy, or functionality. Maybe on a good day you have twelve spoons, and maybe on a bad day you only have eight, but throughout your day, each task takes a spoon away from you. Some days, if you’re lucky, you are left with a spoon in your pocket; other days, you’re empty-handed by dinnertime and just waiting for another spoon—any spoon—to get you through to the next morning.
In the past year, as my flares have become increasingly severe, I’ve had to swallow a jagged dose of reality and accept that despite how much I want to function like a healthy, young individual, I can’t always do that. I simply don’t have enough spoons. If I am hosting an event on Saturday, I need to clear my schedule through Wednesday to recover at home. If I’m working on two projects and someone begs me to take on a third, I have to decline. I have to spend less time doing and more time simply coping. It’s not easy for me to accept my limitations, but I am learning the importance of self care and that it is okay to say “no” when I need to—whether it be to friends, work, errands or life in general.
More than thirty years into my disease, I am just now learning the art of spooning. I am only now accepting my disease for what it is, and where it is headed. I am learning to more carefully budget my daily spoons so I don’t wind up empty-handed. I am learning to give in to my disease when I need to, and fight it when I can. And I’m striving to keep a positive, can-do attitude about my life.
As a busy entrepreneur, it’s not always easy. I keep a lot on my plate, but I refuse to let my disease define me. Limit me, yes—but I will not accept defeat. I know I have it worse than some and better than others, and that my struggle is mine to fight. And, if RA has given me anything beautiful, it is the spirit of a fighter who will always find a way to achieve what I feel I must to fulfill my passions, dreams and purpose.
As with any fighter, it helps to have people in your corner, encouraging you, helping you get back on your feet, cheering for your triumph. I am fortunate for those people in my life, and I hope that by sharing some of my experience, and until we find a cure, you can become that champion to support a loved one with RA.
In fact, you just might be that extra spoon in a moment of need.
* SOURCE: Arthritis Today (Feb 2010)
** SOURCE: EverydayHealth.com
*** SOURCE: EverydayHealth.com