How has your life changed... | Arthritis Information

Karen- what you are feeling is normal. I have posted this article below several times. It really helped me in the beginning and even now- I think I have cycled around a couple of times...hope others get something out of the article too.

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:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

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.

• Level 1 : Denial of Personal Relevance ('So, I have chronic arthritis. That's no big deal — I can handle it.')
• Level 2 : Denial of Urgency ('It's just a few aches and pains. It'll be years before it gets serious.')
• Level 3 : Denial of Vulnerability ('It's just arthritis. I'm sure it won't affect me much.')
• Level 4 : Denial of Feelings ('It's not going to bother me. Even if there are some things I can't do, there are lots of other things I can do.')
• Level 5 : Denial of Source of Feelings ('Sure, I don't have as much get-up-and-go as I used to, but who does? It isn't my arthritis.')
• Level 6 : Denial of Threatening Information ('Arthritis medications may affect some people adversely, but I'm sure they won't bother me.')
• Level 7 : Denial of All Information ('Arthritis is a disease of the joints. You're crazy if you think it can affect any major organs.')

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):

• Marked changes in your sleeping patterns, especially if you have trouble sleeping at all.
• Ongoing fatigue and listlessness.
• Changes in appetite, either a loss of appetite or over-eating.
• Uncontrollable feelings of sadness, guilt, worthlessness or purposelessness.
• An inability to concentrate on anything for longer than a few moments.
• Suicidal thoughts.
• Problems with sexual function.

So