Excellent article arthritis/depression | Arthritis Information

Volume 7, Number 3 (1993)

By Roderick Jamer

Bouncing Back After Bottoming Out

Depression can be beaten-take it from experts

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"Joy and Sorrow are inseparable. Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed."— Kahlil Gibran

In our voyage through life, most of us spend relatively little time at the antipodes of our emotional world. Although with luck we’re seldom mired in John Bunyan’s "slough of despond," we too rarely savour the sweet fruit of unadulterated joy. For better or worse, the greater part of our lives is passed in the temperate region of our emotional sphere.

It’s not given to everyone to enjoy this golden mean, however. In the last issue of the Arthritis News, we heard from some of the exceptions — people with arthritis who have traveled deep into the dark continent of depression. While their odysseys traced different paths, their sorrow and distress were painfully alike: Barbara Brunton, 51, has "rupus," rheumatoid arthritis and lupus. When she first fell ill, she stumbled into a gloom so intense she was immobilized for months, sitting and staring at the floor for hours at a time. Mary Yee, who also has lupus, is 35. For three years, she searched for someone who could tell her what she was suffering from; in the meantime, she fought infuriating scepticism and her own mounting frustration, as well as the symptoms of the disease itself. Robin Saunders, 45, battled similar demons of disbelief while struggling with fibromylgia, constant pain and depression "almost on a daily basis." And Scott MacLean, who’s only 32, has already endured rheumatoid arthritis for 21 years. He, too, knows something of depression: As a teenager, he tried to carve a path out of his personal wilderness — by slashing his wrists.

Each of these story tellers learned to see beyond depression, to see that it wasn’t the only energy in their emotional worlds. Brunton and Yee, Saunders and MacLean, each learned that depression might never completely disappear, but it can be overcome, and learning to rise above it gives you an entirely new perspective on arthritis — and life.

We left Scott MacLean in the last issue of the News leaning toward joy, describing how he’d come to grips with depression. These days, MacLean is getting on with life. He’s busy, involved and optimistic about the future. That doesn’t mean he never gets depressed — "from the onset," he says, "when you’re diagnosed, understand that depression is part of the disease" — but he’s learned to get the better of both his arthritis and his depression, rather than the other way around.

"It’s an ongoing battle," says Mary Yee, whose determination has made her president of the B.C. Lupus Association. The emotional road is "never constant." Even after coming through depression, "you may get depressed again. It’s not one smooth road up. It’s taking a few steps back maybe, then going again. It’s not like it’s Step One, Two, Three, Four, you’re accepting and that’s it." She laughs. "It’s not the way it’s always written up."

Everything — coping, learning to set new goals, getting onwith life— naturally follows from acceptance. "Look," says Robin Saunders, who’s counselled others with the disease, "I will never be well. Ever. That gets a lot of people down, but if you start wondering, ‘Where will I be in 10 years?’, you’re in trouble, real trouble. It sounds corny, but I try to make every day a good day and try to get as much enjoyment out of it as I possibly can.

"If you’ve faced the truth, accepted it as the truth and accept that you can’t change it, then it’s a heck of a lot easier to live — it doesn’t matter what you’re doing. Something very positive and good has come out of this, and in some ways I was lucky to learn that. I learned the beauty of living the truth, and I’m still alive. Some people never get that far."

Getting arthritis is a bit like being pushed out of a comfortable home and into a run-down shack: Your "new" body, the "house" you live in, isn’t so comfortable anymore, and nothing you can do will ever make it the way it was. It’s going to need constant attention, and you’ve got to learn to live with (and in) it. At first, it may seem that all your hopes and dreams, your health and abilities, your recreation activities, your lifestyle, friends, family and employment are in jeopardy. And suddenly your emotional, physical and perhaps even financial resources are pressed to the limit. And you’ve got to accept it? Who wouldn’t be depressed?

Yet depression isn’t usually a first reaction to arthritis. After diagnosis, most people actually go through a series of emotions: shock and fear, denial perhaps, anger, then depression. Not everyone will experience every reaction, nor in the same order, but all of their emotions are perfectly natural, and most may even be helpful.

Take denial, for instance: "This can’t be happening," people protest. Some may even seek out a doctor who can provide a different diagnosis. If denial gets in the way of accepting the implications of the disease or prompt treatment, it can be a serious problem, but, for most people, denial is simply a psychological buffer against the shock of diagnosis.

The next stage is usually anger. Finding you have a chronic illness for which there’s no real explanation and no cure might well make you ask, "Why me? What have I done to deserve this?" Anger, too, is normal and, if it can be expressed, healthy. Get it out in the open; find someone — a friend, family member or professional counsellor— who can help you sort out your feelings, rather than simply dumping on those close to you, or trying to suppress your anger. That can lead to other problems, such as channeling your resentment into resistance to treatment. Instead, try turning the energy of your anger into motivation: Refuse to let arthritis rule your life.

After anger may come bargaining, when people say things like "If only I don’t have to give up golf or gardening or playing the piano..." Or they may compare themselves to others ("I’m not as badly off as so-and-so. I should be grateful"). Usually at this point real acceptance begins, but at any stage, depression may overwhelm them. It’s the most troublesome, recurring, emotional aspect of arthritis, but it’s simply another instinctive response to loss and emotional upheaval. It’s a form of withdrawal, a time to marshall resources and reorganize inner responses to drastically changed circumstances.

"What’s at the base of depression is that we all need a sense of control over our lives," says Paul Adam, a social-work educator with The Arthritis Society’s B.C. and Yukon division. "We all need to feel that we know where we’re going and that we have some measure of control over that." People with arthritis have "a lot of loss in their lives— the loss of a job, self-respect, activities they previously enjoyed and so on. As a result, they experience a sense of purposelessness or lack of meaning, which is certainly a big part of depression."

Adams tries to help people make a transition from their "old me" to a "new me": If they can’t do the things they used to do, he says, the "old me" no longer exists; they then have to discover what they can still do, what their "new me" will look like and what will still give them meaning. It’s a difficult transition, says Brunton, but you have to make it: "You have to find some sense of your worth, that there are other things you can do. It may be an opportunity for people to realize they have gifts they’ve never seen or utilized."

With no outside diversions, Brunton did some serious introspection before she came to that realization. Believing that mind, body and soul, or spirit, "have to work in concert to be a healthy person," Brunton began "a lot of internal house cleaning;it was a time of real inner growth for me. When I look back now, what I’m doing today [as an Arthritis Society counsellor] is far more satisfying than anything I’d ever done before I got this. At one time I thought my arthritis was huge, and I was little. Now I see it totally reversed. It’s really done a lot for me." Her life, says Brunton, is better "in almost all respects."

You have to make certain changes to your life, says Mary Yee. You have to say to yourself, "‘OK, I can’t go out and I can’t do this all day, but I can do this for an hour. ’It’s learning to change your attitude and your expectations of yourself, so that you don’t sit at home and say you can’t do anything. Try to find out what your limits are."

Dr. Gerald Devins, an associate professor at the Clarke Institute of Psychiatry in Toronto, has been working on what he and his associates call "illness intrusiveness," the idea that, to the extent an illness interferes with activities and interests, people are more distressed and less happy. Not everyone with arthritis is as energetic or determined as Yee: More often than not, the disease affects people’s behaviour, and they do less; therefore they have less opportunity to experience what Devins calls "response-contingent positive reinforcement." In other words, he says, "they have less opportunity to get the good things in life, because they’re doing less."

Generally speaking, happiness and contentment are the product of a balance between positive and negative experiences, Devins says. To feel really good, we not only need positive experiences, we need more positives than negatives; simply reducing the negatives isn’t enough. One effective treatment for depression and emotional distress involves getting people more involved in valued activities. The problem is, Devins says, "if you suffer alot of pain and disability and it hurts like crazy to go bowling, but that’s your passion, that’s going to compromise your ability to benefit from the treatment. It demands a more creative approach to what you’re going to do to still get the zing out of life that everybody needs."

The point is, an active response is not only the best way to cope with your arthritis, it’s the best preventative for depression."Get out and do something," Brunton advises. "Go to school if you’re academically oriented. If you’re people-oriented, get out there with other people. Do volunteer work if you can."

What turned Scott MacLean around was taking charge of his sister’s three children: "They pulled me outside of myself, to the point I could say, ‘I’ve achieved this.’ It’s a 24-hour-a-day job looking after kids, and I did that. The kids are important enough that it overcomes any desire I may have to stay in bed all day." The responsibility, he says, was bigger than his depression.

A friend encouraged Brunton to work with seniors. "Are you mad?" she responded. "I can hardly get dressed in the morning." No, the friend said, "but you’re going to go mad if you don’t do something." So, Brunton dropped into a daycare centre, where she met "a wonderful gentleman,"a former college dean who had Alzheimer’s. "He never remembered who I was, didn’t know his wife. We’d work on crossword puzzles every day, and I’d go home sometimes in tears, because I’d think, ‘I did something. I didn’t just wallow. I went out and did something’."

Taking charge of her mental, emotional and spiritual life gave Brunton back a sense of control, and a sense of hope, "and you can’t go anywhere if you don’t have hope — about something. Make your arthritis this big," she says, squeezing a jot of empty space between finger and thumb, "and you huge. It’s hard, no question about it, but it’s salvation, too. You need to look for things in life that really have meaning. To me, that’s another human being — compassion, love, caring, going beyond appearances. You have to find balance."It’s unhealthy to be too self-absorbed or to forget about yourself, she says: "It’s somewhere in the middle."

Brunton seems to generate her own energy: Before her arthritis, she had a demanding job as a project manager for the Canadian Mental Health Association. Yet in the months after her arthritis struck, she was all but immobilized — "catatonic,"she says — with pain and depression. Since then, she’s started a support group that meets once a month, as a way of "getting to know other people who have arthritis and just sharing and being part of the same culture." People, she says, "basically all have the same needs, really. I don’t think anybody’s any different, not deep down."

"Support services are really needed, particularly in the first couple of years of the disease when people may be more frustrated," says Toronto rheumatologist Dr. Rachel Shupak. "With a support group such as The Arthritis Society now offers, people can be given information first-hand by professionals, who can sit them down in a group and discuss their feelings and reactions and perhaps bring in social workers, psychologists or psychiatrists who are able to give them some ways of dealing with their illness. I’ve referred a number of patients there, and they’ve benefitted from just talking to other patients with similar problems. They’ve been able to see that they’re not alone, that there are ways of dealing with their illness and their depression. I think that’s important."

Support groups can be especially helpful with young people, who may be fighting misconceptions of arthritis as an "old person’s disease"—why do they have it? Discovering there are other young people going through the same experience is "validation," says Paul Adams. "It’s a weight off their shoulders, and it’s motivation."

For many people, a dose of motivation is just what the doctor ordered. "We don’t cure their arthritis," Shupak says. "We control it if we’re lucky." Most people come to accept their arthritis, "and in that sense they cope within the context of the disease." But there are some who give up right at the beginning, "and they’re the difficul tones, because I think attitude toward the disease in some ways influences its outcome — perhaps in a small way, but in some people it may be in a big way." The majority of Shupak’s patients are "fighters." In essence, she says, "they conquer their disease because they learn to live with it. They really do learn to fight."

"I try to be positive," says Robin Saunders, "but sometimes the whole thing just gets me down. It’s very easy to give in. It’s too easy to give in." Saunders reminds himself he’s no worse today than yesterday, "and yesterday I wasn’t depressed. Feeling sorry for yourself is a trap. You’ve got to fight your way out of it." Become aware of the emotional cycles your illness imposes on you, Saunders says; then tell yourself, "‘Hey! Get your act together.’ It takes a while, but you can get yourself out of it."

Many people with arthritis keep harkening back to when they were well and using that as a benchmark. No wonder they’re depressed, Saunders says. Don’t look back, he advises. A former competitive skier, Saunders "hardly ever" thinks of when he was well. "If I think about skiing, I think, well, that was when I was skiing. I don’t think, that’s when I was well. It’s the past. This is the life I lead now, and in many ways it’s not a bad life." Saunders goes so far as to call himself "a pretty lucky guy. There are still things I can do. There’s still beauty in the world, food to be eaten, music to be listened to..."

"Be good to yourself," says Mary Yee. "Allow yourself to be tired and not feel guilty about things that ‘should’ be done." Things that make you happy you have to do, Saunders says: "If it’s gardening and you live in an apartment, find a way to get a bunch of plants. Do things that bring you joy, things you truly love. That starts to build, and you begin to feel better about yourself. Don’t do things you don’t like if you can possibly get away from it. Sally Jean wants to come over for tea and you hate her, and it’s agony sitting there for two hours — why do it? People do do these things, right? I mean, they spend their time on stupid things they don’t want to do.

"Take control of your life. Do things you want to do, and be damned about the rest. Either people will like you and accept you or they won’t, so start living your life properly. That carries you through a lot of garbage."

Paul Adam encourages his patients to take control of their lives. He sometimes asks them to keep a daily log to track pain, fatigue, sleep and activity. "If they can understand what it is that brings about these fluctuations," he says, "they can understand what it is that keeps the pain down, and they can be more in control of their lives.

"It’s so easy for people who have a chronic illness to become unbalanced in their lives, either because they lose things in their lives they can no longer do or because they don’t fill them up with other things. I see a lot of people whose illness and pain become their whole life. It’s looking at their spiritual side, their physical side, their social side, their work side, their self-esteem — all of that — and looking at what they can do in each of these areas that will leave them with a balanced lifestyle. It’s easier said than done, but that’s what I suggest to everybody I see, and I try to help them shoot for that."

Other people can help get you through depression, but "only if you do it with them," says Saunders, "if you participate. It’s a self thing. You get yourself out of depression or you ain’t going to get there. Other people can help, but you’re the one who ultimately has to cross the line. It’s your point of view."

Take Charge!

Educate yourself. Knowledge is the key to self-managment, and regaining a sense of control over your arthritis is a positive step.

Get up every morning and make an effort to look your best; it will help you feel your best.

Make a list of daily activities and do them, even if it’s only one thing. Too long a list is an invitation to failure — and depression. (Do something you really like to do. Activity dispells the blues better than anything.)

Rest. Fatigue erodes your coping capacity and feeds depression.

Avoid stress. Maintain a proper diet.

Talk to somebody — a friend, family member, or professional counselor — who can help you sort out your feelings. Don’t let unexpressed emotion eat away at you.

Think about things that make you happy. Look for something beautiful in life, even if it’s just a sunset or a bowl of flowers. Read. Listen to music. Distraction lessens pain.

Join a support group. They encourage positive health behaviors, provide coping tips, reassurance and real understanding, and help educate.

Learn to accept your limitations. Accept that you can’t do everything you once could and that you’re going to be a different kind of parent, spouse, friend than you were.