About 2 weeks ago, I started having significantly more pain then several days later, swelling that I was afraid only I could see. My parents confirmed it but I didn't call the dr for several days. In the meantime, I fell and caught myself on that wrist and mowed my yard while DH was OOT. I finally called the dr and he wanted me to come in. I was afraid it would be like taking your car in and it no longer makes the noise. He immediately confirmed that there was swelling and tenderness in new joints and while he didn't change my dx, said that I was, in fact one step closer to RA. It sounds like I'm glad, when really, I'm not...its just that for the first time, I didn't have to convince anyone. He added sulfasalazine to my protocol (to which I added lots of water and probiotics) He was a bit more sympathetic and understanding. In a weird way, I feel better just knowing I'm not crazy. This is about the 4th time that I have had to have my dx become physically obvious before someone validated it and I didn't feel crazy anymore!! The good news is that this time, I was more confident that people's opinions didn't mean much and that I DO, in fact, know my own body.
Hey Rachel!
Hi Rachel, like Pip, I'm glad you're getting closer to a diagnosis and that your doctor is taking your symptoms seriously. I'm also taking Sulfasalazine, probiotics along with it and lots of water. I really feel that the Sulfasa. is working well with the MXT.
Many years later I'm still sad about the diseases and on days that I'm feeling almost normal I can't conceive that I have 4 auto immune diseases. We all go through periods of sadness and grief for what has been taken away.
Rachel, I can totally relate. I was finally relieved when I got my DX. It was like my pain was real to someone else besides me. I wasn't just imagining it or some crazy person. Once I did get the dx it took a while for it to sink in for me too. I totally get the being in a bad dream and waiting to wake out of it. Somedays I still feel that way. I just keep thinking tomorrow will be better because I will make it so. I have RA it doesn't have me.
Arthritis and the Cycle of Grief
According to Kübler-Ross, there are five stages of grief we experience after a loss, be it the loss of a friend or the losses associated with a chronic illness:
In the classic pattern of grief, a person would go through each of the stages sequentially, but, as many people have discovered, it doesn't always work that way. You may go through the stages 'out of order,' or even 'revisit' one or another after having passed through it. Not everyone will experience every reaction, nor does everyone experience them in the same order; either way, the emotions they do undergo are perfectly natural, and most may even be helpful.
1. Denial
Take denial, for instance: 'This can't be happening,' people protest. Some 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. Israeli psychologist Dr. Shlomo Bresnitz has suggested there are actually seven levels of denial that people may unconsciously employ to relieve the stress or anxiety caused by an experience of loss.
Denial's a normal response to a threatening situation, and the level of denial anyone employs will almost certainly depend on the seriousness of his or her condition. It's easy to dismiss arthritis when it's only a few aches and pains, but not so easy to do when those aches start interfering with your daily activities. Sooner or later, denial just isn't an option any more. At that point, you'll probably start to get angry.
2. 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 a normal emotional reaction, and, if it can be expressed, healthy. The most positive way is to 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 angrily (and often without apparent reason) on those close to you. Trying to suppress your anger can lead to other problems, such as channeling your resentment into resistance to treatment.
Try turning the energy of your anger into motivation: Refuse to let arthritis rule your life. Find a way to work it out: Beat the stuffing out of a pillow, or use it to muffle a good, tension-releasing yell. Take a note from big corporations that have 'stress rooms': Buy one of those weighted, inflatable punching dolls for kids, and take out your aggressions on it. Go for a walk, if your arthritis allows it — the exercise will do you good. Try to find ways of releasing your anger, without turning it on those around you. That will happen to the best of us at times, but let your loved ones and friends know it isn't them you're angry at — it's your arthritis. Whatever you do, don't shut them out or turn them off; you need their love and support more than ever.
3. Bargaining
After anger — or right along with it — may come bargaining, when people say such things as 'If only I don't have to give up golf or gardening or playing the piano... I'll never get angry at anyone ever again.' They may promise the moon in a vague sort of way in return for release from their condition, or seek fleeting solace in comparisons with others ('I'm not as badly off as so-and-so. I should be grateful'). Needless to say, this period usually passes fairly quickly, if only because most people quickly realize the futility of such empty bargaining.
The next stage in the grief cycle isn't so easily overcome. In fact, depression can be overwhelming. It's the most troublesome, recurring, emotional aspect of arthritis, yet it too is an instinctive response to loss and emotional upheaval. In its most basic form, its a kind of withdrawal, a response to drastically changed circumstances, and a time to reorganize inner resources.
4. Depression
Everyone, healthy or not, feels a little blue at times; there'd be something wrong if they didn't. Those emotional slumps are what psychologists call 'endogenous' depression, inner storms that are usually as temporary as the weather — they might even be 'caused' by the weather, or by waking up 'on the wrong side of the bed.' The other type, 'reactive' depression, is rooted in some definable outside event, such as being diagnosed with arthritis.
'We see a lot of reactive depression,' says Toronto rheumatologist Dr. Rachel Shupak. People with arthritis, she says, 'have a lot to deal with.' But in more than a dozen years of practice, the number of patients Shupak has referred to a psychiatrist for depression is probably fewer than 20. Most patients are able to cope, and most cope remarkably well, she says: 'Anybody who has to deal with the kind of pain and disability that people with severe forms of arthritis have to deal with, well, if they didn't go through some kind of depression, it would be very unusual. I give them a lot of credit that they're able to look within and find the inner strength to deal with it. And most patients do.'
Shupak does her best to prepare her patients for the hard realities of arthritis treatment, right from the shock of the initial diagnosis. She admits that she may even contribute to their depression to some extent in the beginning, simply by being 'very honest' with her patients. Why? Because she doesn't want them to have unrealistic expectations. It's a tough-love approach. She tells rheumatoid arthritis patients, for example, that they have a chronic illness they'll have to deal with for the rest of their lives, but there are medications to control the disease, and that they'll attempt to keep their lives as normal as possible.
At the same time, Shupak tries to paint as reasonable or optimistic a picture as she can. She points out that taking an aggressive approach initially with strong medications is more likely to reverse at least part of the inflammation associated with their condition, and that will get her patient feeling better more quickly and prevent damage later on. 'In essence,' she says, 'we'll be able to give you a better lifestyle down the line'.'
It's still a double whammy. Reeling from the shock of learning you have an incurable illness, you discover you're going to have to take a course of medication that could have serious side effects. Getting depressed over that kind of news is to be expected. Unfortunately, it's the one part of the grief cycle that isn't easily put behind you when you have arthritis, which may impose its effects in an up-and-down course over many years: You grieve every time you discover something else you can't do anymore, says Mary Yee, former president of the B.C. Lupus Association. 'It's an ongoing battle.' Even when the disease seems to be under control, 'it's not constant. You will dip down; you may still get depressed again.'
Most people learn to live with that inconstancy, but if your distress is starting to interfere with your functioning — your ability to get through a normal day — if you're really unhappy and you can't tolerate it or don't want to tolerate it, if you've tried to change things and you can't, then it's time to seek professional help. There are plenty of resources available — among them, your family doctor, rheumatology clinics, The Arthritis Society, social workers, provincial psychiatric associations or any public hospital.
Other emotional changes and signs of clinical depression (depression for which you should seek professional help):
Illness Intrusiveness
Dr. Gerald Devins, an associate professor at the Clarke Institute of Psychiatry in Toronto, describes 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 has the energy or determination to respond in an active way to arthritis. More often than not, people do less than they once did; 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. 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 a lot 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.'
'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.'
To combat such feelings, Adam 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, but it's one that you have to make. You have to find some sense of your worth, discover that there are other things you can do. For many people, it's an opportunity to realize they have gifts they've never seen or utilized.
The point is, an active response is not only the best way to cope with your arthritis, it's the best tonic for depression. Get out and do something. 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.
Barbara Brunton, who's in her mid-50s, used to work for The Arthritis Society in Toronto, counselling people over the phone and in support groups. She has 'rupus,' a combination of lupus and rheumatoid arthritis (RA), and she's experienced depression first-hand. More than a decade ago, when she was first diagnosed with RA, Brunton was so sick, her doctor wasn't sure she was going to pull through. She lost 25 lbs. in 12 days and was so weak she couldn't lift a teacup. 'I was very, very frightened,' she says, 'because of course RA is the one form of arthritis that is potentially crippling. So, you always go through the worst scenario — I'm going to be in a wheelchair in no time — pity, pity, that kind of thing.
'I can remember sitting in a chair very much like this one,' she says, swollen knuckles gripping the arms of her chair, 'staring at the rug for five hours at a time. The tears would dribble down, and I'd just sit there. I didn't want to read or watch TV. I didn't turn on the radio. I didn't open the curtains. I was brain-dead.'
Brunton's depression centred on 'an incredible feeling of hopelessness, [which was] in one sense a loss of control, when you lose your ability to feed yourself, get dressed, do all those kinds of things. I had to quit work. I felt so ill I really didn't go beyond that, except to wonder what was going to happen to me. I was devastated.'
Not unnaturally, a lot of people with a chronic illness ask an obvious question: Why me? Brunton wondered if she was being punished: 'I thought, 'Well, you wouldn't get this horrible disease if you hadn't been a bad person.' Many people never get past that point, and there's no answer to the question 'Why me?' That's just the way it is. Yes, it's unfair, but you have to move on, as Brunton and countless others have learned to do.
'I was a very active person,' Brunton says. Her arthritis cost her her job, forced her to retire her bicycle and give up a full roster of recreational sports, pass on gardening — 'all of those things.' But if you can't do what you used to do, she says, 'then you have to ask, 'What can I do?' At some point you have to make that transition. You have to. It's hard, but your option is to stay in depression.' And that, Brunton discovered, is no option at all: 'At one time, I thought my arthritis was huge, and I was small.' It took a long time, and much pain, but now, she says, 'I see it totally reversed.'
In fact, despite the distress and pain and discomfort, Brunton actually thinks her life is better than it was — 'in almost all respects,' she says, 'because I had to prioritize things differently. I had to develop a new set of values. I look at things completely differently now.' Coming to grips with her arthritis has given her a peace and happiness she simply didn't have before the arthritis forced her to re-examine everything she held dear.
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.'
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.'
The key to making that change is a tough one: You have to learn to accept your arthritis as an incontrovertible fact. That's the fifth stage of the grief cycle.
5. Acceptance
Everything — coping with arthritis, learning to set new goals, getting on with life — naturally follows from acceptance. Robin Saunders, who has severe fibromyalgia and has counselled others with the condition, is in his late 40s. 'I will never be well,' he says. '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.'
Saunders has discovered that, once you've faced and accepted the truth of your situation — that you have a chronic, incurable condition that isn't going to go away — it actually becomes much easier to live with. Acceptance won't happen overnight; it isn't easy learning to accept something as big as a chronic disease, 'but when you start going through it,' Saunders says, 'you start viewing life very differently. I think you do become a better human being, because now you have to face the truth every day.'
Saunders' life is simpler than it was, and he's happier for having faced the truth about things in his life. He's even found that learning acceptance has developed into a skill that carries over into every other part of his life. That, he says, has made him a better person, someone who's learned to value his time and his energy. He doesn't argue angrily anymore, and, if he does get angry, he blows it off quickly, and it's gone. 'I don't get involved in or worry about things over which I have no control,' he says, 'and I used to. I've come to view it very simply: If I can't control it, then worrying about it is a waste of energy, and my energies are a valuable commodity.'