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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:
- Denial
- Anger
- Bargaining
- Depression
- 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.
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.
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