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Support for People with CRPS
By Phyliss Shanken, MA
I wrote an article about my personal experience with CRPS that
appeared in ADVANCE for Physical Therapists and for Occupational
Therapists in 1993. In response to that article, I received
phone calls from CRPS sufferers who wanted to talk, who felt
isolated and confused about this disease.
I have spent hours on the phone listening, supporting, and
giving guidance on ways to deal with CRPS. As a result, I have
been sharing my ideas on how to cope with chronic and acute
physical and emotional pain.
If those who responded to my last article are representative
of CRPS sufferers in general, then we can assume that you had
symptoms of CRPS well before you were diagnosed. You probably
saw an orthopedic surgeon, a family doctor, a rheumatologist,
or a neurologist, and not necessarily in that order. And at
first when you eventually learned of the diagnosis, you were
probably relieved because finally there was a name for your
suffering. Then you assumed that the crazy feeling you had
begun to experience, as well as the doubting looks you had
been getting from loved ones, could finally be put aside.
You felt dependent on people who didn't seem to know all that
much. You craved information, and hung onto your doctor’s,
physical or occupational therapist's, every word. Yet you
didn’t want to hear what you feared was the truth. Maybe you
finally found an CRPS specialist who told you to learn to live
with it. Somehow, you had not developed the skills you needed
to “live with it.” You were overwhelmed. You felt immobilized
because this problem erupted without warning: You are innocently
living your life and then, Boom! Out of control.
This is the first phase of the predictable life stages that
occur with any crisis or change, according to Roger Gould,
MD, who wrote Transformations [New York: Simon & Schuster,
1979]. He calls this phase immobilization: Internally, you
were stamping your feet, saying, "I don't want to have to
handle this. It's not fair."
The next stage is minimization: “Now I have a name for it,
so I’ll be okay.” We need this stage so that we can build
a “cocoon” around us to help us build up our resources for
the long road ahead.
As you moved out of the denial phase, you may have experienced
depression, which is based on the reality that you have no
way out of this, and coping with it is just asking too much.
You feel “down” and unable to move on.
Then you shifted into the frustration phase, acknowledging
that you have CRPS and don’t have the ability to change it.
There's an old Chinese proverb: “When you have a disease,
do not try to cure it. Find your center and allow for healing.”
Or, as Bill Moyers says, “Healing is possible even when cure
is not.” When you face the emotional pain of being told you
have CRPS and the physical pain of this disease that makes
you feel so out of control, try to allow for healing without
trying too hard to control that which is uncontrollable.
When you get into the center of pain, when you relax and allow
the sensations to take you over, it doesn’t hurt so much.
Pain is actually resistance. Bracing yourself merely magnifies
the pain. Therefore, try to investigate the pain rather than
attempting to eliminate it. Is the pain sharp or dull? Cold
or hot? Suppose you could draw the pain? What colors would
you use?
Flow with your feelings. Here are some guidelines:
Position yourself to embrace the disease. Even though it may
not be true, assume that you will have CRPS for the rest of
your life. This resignation may work to prevent you from having
to fight so hard against the realities of physical and emotional
pain. When you let go and stop fighting, often pain subsides,
and CRPS feeds on pain. Isn’t it ironic? It is by assuming
that you won’t get better, that you have the best chance to
get better. Work through all the aspects of CRPS so that you
redefine yourself. “I am a person who lives with certain kinds
of sensations, whereas other people don't have them. I’ll
have good days and bad days, but I’ll handle it. I will try
to make myself as comfortable as possible and seek out ingenious
ways to survive. I will be proud of these creative solutions
to a heretofore uncontrollable situation as I define and take
charge of the areas where I do have control.”
Some of the solutions might be ways to use pillows to prop
your affected limbs, ways to use the TENS unit so it’s not
too conspicuous, wearing gloves or using heating pads- whatever
works.
Give up what you can’t control. The diagnosis is here, the
swelling is visible and not matter how hard you stare at it,
and it won’t go away, so perhaps you ought to stop focusing
on it. In fact, your morbid fascination with how your affected
area looks might cause more trouble.
As much as possible, forget you have this disease in the sense
that you need to make your response to CRPS a way of life.
Try not to think of yourself as an invalid. Share with people
who love you so that you can be nurtured, but try not to milk
it too much.
When I say try not to focus on the pain and forget you have
this disease, I recognize the contradiction. This means accepting
the reality of your disease, then working on letting go of
all the resistance, protest and hysteria that impedes your
ability to submit to, yet take charge of this crisis in your
life. You can't let go of the feelings until you allow yourself
to feel them. Much of what I have said fits into the final
stages of Dr. Gould’s sequences of change. Eventually, you
get to acceptance of reality. You can now say, “I have CRPS.”
Then you ask, “Now, how am I going to live with this disease?”
This is the testing phase. “I wonder what it will be like
now that I have to use a cane to walk?”
The next phase is searching for meaning. "Now that I have
accepted that I have CRPS and I'm learning ways to deal with
it I want to see how to make sense out of why this happened
to me and how it will affect my view of myself. Maybe I'll
write a book about it to help other people. Maybe I'll start
a support group. Other people have handled this; I guess I
can, too. I will have a unique way of handling it.”
The last phase is internalization, when you incorporate the
change into your behavior and your perception of the world,
the point where you have worked through the conflict. You
no longer have to concentrate, test, question or marvel over
your condition. Instead of feeling defective because of CRPS,
you can now say, “I need special aids to make myself comfortable.
I am unique in that way.”
Please consider psychotherapy--it can help in terms of adjusting
to the stress of this disease, learning why you might have
resistance to coping with pain, and other problems that may
erupt in your life as a result of the isolation and rejection
by others.
You may have had some problems before the CRPS that are now
coming to the fore. Your personality may be the type that
inhibits healing. Perhaps you haven’t been tested like this
before. Your coping mechanisms aren’t working the way they
used to. Look for other areas in your life where you have
difficulty giving up control.
It's okay to be angry, but then you need to move on and take
joy in the way you’ve adjusted to the situation. If you remain
stuck in the angry, frustrated, self-pity place, then you
should consider psychotherapy.
In general, those who can accept the fact that all is not
lost if things don’t go their way are most likely to reach
the internalization stage. By understanding the process you
go through when faced with any crisis, you can say, “I'm depressed
right now. This is where I need to be at the moment so I can
work through all the feelings I am to experience and eventually
I can go back to living a normal life.” The more you allow
yourself to flow with the inevitable emotions involved in
change, the more your self-assurance emerges and the greater
your ability to confront unavoidable stresses of life, including
CRPS.
Phyliss Shanken is a licensed psychologist in Pennsylvania
and Director of Psychological Services of INTROSPECT in Montgomery
County in Colmar, Pennsylvania, a psychological/psychiatric
practice facility. She also maintains a private psychotherapy
practice. For more information about Phyliss Shanken,
click here. |
