~From Within...~

Three be the things I'd be gladdest to see:
Short-term solutions, strange rivers, and thee.
Two be the things I am joyous to hear:
Long-term endearments, and Baez, m'dear~!
These be the things I shall have 'til I die:
Love in my heart and the am part of I.

L Randall  8-9-97

Table of Contents

  • Personal Thoughts on Chronic Pain
  • More Thoughts on Chronic Pain
  • Pain Psychology - The Family Picture
  • Grieving and The Pain Process
  • Dealing with Anger

    ~Personal Thoughts On Chronic Pain~

          I've given chronic pain a lot of thought.  I'm glad I'm sixty(ish).   When I was younger, I had a stronger body to help pull me through, along with a certain amount of idealism.   When I got older, I turned more to my heart and mind to try to make sense out of the experiences I had lived through.

          My key word for my 40's was "Resistance."  "It's not right for this to be happening~!  If I can just find the right answer, I (or someone else) can fix it."  My key word for my 50's seemed to be "Introspection."   "This is real, this is where I'm at.  I...am."

          Now I am turning sixty and realizing life is not infinite...

            But maybe these stages are not only ones related to decades, but relate just as well to chronic pain, no matter what our age.   I don't know the answer to that, but suspect it may be so.  Life is not linear, it is cycles within cycles, all having some connection and some relevance.  And so it is with pain.

          Chronic pain is just another of the many life challenges that temper and mold us.  I am beginning to realize that this is what life is:  a series of experiences in which we encounter challenge and have the opportunity to fight it, face it, accept it, and finally embrace it, weaving our experience of it into the tapestry that is our lives.

          In my experience of chronic pain and illness, there are balances.  Sometimes I have to remind myself of this, but there are aspects to chronic pain - if I open myself up to the *whole* experience, and not just part of it - that run the gamut from the deepest despair to sheer joy.

          The despair comes when I think about what I have lost:  a career I loved passionately; an active healthy body that could make love with abandon, ride motorcycles or rapids with ease; run and play and climb and dance; and do all the things healthy people take for granted.

          The joy comes when I think of what I have gained:  a sense of self that comes from looking inward and finding wholeness there, rather than focusing on whether or how I fit into others lives based on what I can do instead of on who I am; realization that I have hidden strengths that I never knew existed; skills learned from necessity that allow me to cope and create a good quality of life no matter how bad the pain gets at times; and enduring new relationships with people who are undergoing similar experiences and who have a depth and sensitivity that makes me realize how blessed I am to have found them.

          I have had many life experiences:   many of them difficult, all of them with a hidden gift in them.  Chronic pain has, by far, been the most challenging experience of all, and continues to be so.  But it, too, has its hidden gifts.  When things are bad, I have learned to look for any gifts I might have missed, much like a child looks for rainbow-hued eggs in unlikely places on Easter morning.  When my strength is exhausted, I find that these "gifts" can sustain me until I regroup my forces.  One of these gifts is all of you and knowing that I am not alone in this.

          I think one of the biggest hurdles I had to get myself over was this thing called "acceptance."  For me that doesn't mean that this is necessarily going to go on forever and resigning myself to my "fate."  It does mean, however, that I have to accept where I am in this moment, for today only.  By breaking time down in this way, I am much better able to cope with whatever is going on.  I am better able to manage the daily things or ask for the help I need to get through this minute, this hour, this day.  And, believe me, I don't always do it gracefully!  "Gracefully" often goes out the window when my pain level exceeds my threshold of patience and tolerance.  Asking for help and support has never been one of my strong suits.

          I don't view pain as "the enemy" any more.  If I were to hate and reject it, then I would be hating and rejecting a part of myself.  If pain becomes the enemy, then so do I, and I can ill afford to be at war with myself.  I am not my body, but my body - for better or worse - is part of me.  I can't change that fact any more than I can change the color of my skin or my age.  And, so, I accept even the parts of me that ache and burn and betray me at the most inopportune times.  How can I do otherwise?

          I can't change my pain, but I can and have changed how I live now, who I surround myself with for support and comfort, who I trust to go to for competent and compassionate help, what I do to nurture and sustain what I have to work with physically, emotionally, mentally, and spiritually.   Because of this I am not who I was before the pain, I am more.  I can't explain it, but my inner world, at least, is fuller, richer, and more precious than ever before.  I don't know that I would have discovered this...depth of feeling...without the challenges that living with chronic pain has presented.

          Do I like it?  Not by a long shot!  As I sit here writing this I am wracked with pain.  It has been an especially difficult time and I can't seem to get comfortable no matter what I do.  But I am not tormented by it.  I am doing what I want to be doing, which is writing this to you out there; and that is only one of the ways that I keep the pain from controlling my spirit, no matter what it is doing to by body.  There is something about reaching out and touching others (and having others reach out and touch me) that transcends pain.  We touch, and the touching continues us.  Pain or no pain, we all need to be "continued."   None of us need ever be alone again.

    You know, it doesn't even matter what faith we embrace (or don't).  One of the things that has gone wrong in today's world is that we all feel so separated from one another.  If we only knew that no matter what our faith and beliefs are, no matter what our sexual orientation is, no matter the color of our skin, no matter what our background or health or education or financial status is - we are all in this together and the things that affect one of us affects us all.

          One more thing:  pain is not something that is visited upon any of us for any particular reason.  It is - merely - one more facet of life like any other, and we do with it what we are able.  Pain is not any kind of judgment about our worth.  Nor does any person, private or professional, have any right to judge or invalidate us because we are in pain or ill or disabled in any way.  We are all worthwhile.  We do the best we can, and that is enough.

    Copyright © 1997 - 2010 - L Randall

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    ~More Thoughts On Chronic Pain~

          I was thinking about your letter today, when I ran across a letter from CO-CURE about a new teaching video for doctors that came out of a recent CDC conference.  Two things struck me as important enough to make me rethink the value of behavioral psychology in the management of chronic pain and other chronic conditions:

    "It was stated that CFIDS is a biologically based condition that is currently poorly understood.  The video emphasized that CFIDS is not depression.. although depression does occur in people with CFIDS."

          It [the video] did not state that cognitive behavior therapy (CBT) would cure CFIDS.  It did state that CBT would help patients to deal more effectively with their chronic illness and could reduce disability levels.

          Looking back on my pain clinic experience with a behavioral psychologist, I have to agree with this last sentence.  Although I have never been "accused" of having an abnormal psychological component relative to my chronic pain condition, like most chronic pain patients I tended to become defensive if it was suggested that one could change his/her life by changing one's thinking.  I took this to mean that I should be able to get well if only I would change my attitude/beliefs about my condition.

          I've learned that there is, indeed, an emotional component to everything in life (how could it be otherwise?) and that how I think about things does make a difference.  Addressing fears and anxiety and understanding their (often) irrational but well-founded sources is important.

          One of my fears involved dealing with doctors; another was jumping through the many hoops that the insurers toss in front of most of us.  One of the most difficult things for me to learn was assertiveness.  Another was for me to realize that past experience doesn't have to control my reactions to present events.

          "Change your attitude/behavior = change your life" isn't that simple when it comes to chronic conditions, I've discovered.  Society has effectively programmed its members to denounce that which isn't obvious and scientifically provable.  Even when something is scientifically correct and well-documented (such as the use of narcotics to treat chronic pain), stereotypical attitudes (narcotics = drug addicts = results in drug-seeking behavior, etc., etc.) wield far greater power than reason.  Anyone suffering from "a silent illness" automatically has two strikes against them from the beginning.  One is forced to adopt a defensive stance, like it or not.

          Since pain is such an individual entity, (in my opinion) learning how to communicate one's experience is critical to the doctor/patient relationship as well as to all other interpersonal relationships.  I would, in that context, see behavioral psychology as a front runner in teaching patients and medical students (in your case) how to find a common ground.  Even though I became very good at managing my situation, I discovered (much to my chagrin and several years into the pain process) that I didn't know how to talk about pain, much less express my feelings about it!  Two years ago I joined a chronic pain e-mail list called Pain-L.  That was the beginning of many positive changes for me, the most important of which was learning that my experience is not unique.  Pain-L grew into an impressive membership of not only chronic pain sufferers, but many healthcare professionals:  psychologists, doctors, and others who are not reluctant to learn from us, answer questions, and give advice.  It was there that I began to develop a "pain vocabulary."  From that I went on to author a pain scale, for starters (on my web site), that is uniquely designed for the individual and quite different from the generic 1-10 scale. The ‘functional’, self-directed nature of it’s format is very appealing and has proven to be very effective as a communications tool.  Patient's adaptations of my scale are becoming more widely used by various doctors, clinics, hospitals, and support groups.

          Learning how to talk about my pain was the beginning of learning how to think about it differently.  Armed with new communication skills, I became able to make myself understood.  All of my relationships, both professional and personal, improved.  And I learned how to become appropriately assertive and more discerning.  Where my feelings were often controlled by "the system" before, I became able to take charge of my life and make informed decisions about such things as healthcare.  From there, I became more capable in making other decisions about my life.

          Whether or not to continue working is such a tough decision when one is faced with progressive disability.  Finding something worthwhile (and, hopefully, lucrative) to do is so important.  We're young yet, and we have so much to offer.  Unable to work (and having gone through a tremendous struggle in accepting this), I found an outlet via my computer.  I hope, with time, my writing might develop into something more concrete, more focused.  There is such a growing need for chronic pain information and support out there.  I want to write about my experiences and, hopefully, touch others and give them hope.  We touch, and the touching continues us.

    Copyright © 1997 - 2010 - L Randall

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    ~Pain Psychology - The Family Picture~

          I strongly believe that there is a tie-in between chronic pain and the grieving process.  Not just the pain patient, but the whole family is deeply affected.  There is a time frame that one can expect to go through.  In my experience, not much resolution comes until the five-year mark or so.  And that comes only with a lot of commitment to hard work and self-education.  Often the patient is dealing with so much physical stress that the emotional component doesn't get equal time, or is seen in a negative light.  For the chronic pain/illness patient and his/her family, those first years are too bound up in the struggle with the healthcare system and radically changed family dynamics.  I believe the effects on the family are every bit as drastic as they are for the pain patient, and that this needs to be addressed as aggressively and with every bit as much compassion as the patient's needs.  Also, the issues are different.  I wonder why no one has written about this?

          Too often I see families torn apart or dissolved when one member becomes disabled, and I believe that this is often because the differing needs are not recognized and addressed.  Since pain is a "silent illness", it makes the situation all the more difficult to deal with.  The fears of patient and family are much the same, but the approach comes from very different directions and problems arise because someone isn't being heard.  The loss of productivity and ability, the feeling of being a "burden", the fear and resentment felt by family members, the terrible anger felt on all sides, the helplessness, the stigmas attached - where else do you find all these dynamics and more rolled into one?  No wonder there are few survivors.  I would like to do something to change that.  Even now, I find myself "mediating" at times, trying to help the pain patient to understand what the family is experiencing, trying to help the family to understand where the pain patient is coming from... Trying to help both cope with an adversarial healthcare/insurance system. No wonder everyone folds up.

    Copyright © 1997 - 2010 - L Randall

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    ~Grieving and The Pain Process~

          Your letter really touches me.  I hope so much that my thoughts about own experience with chronic pain may give you some help and some hope.  I was where you are now for a long time.  I'm a self-motivated type-A person whose life was full and active and whose work was her primary focus (and source of great joy.)  To find my life suddenly wrenched in a different direction was something I could and would not accept.  I really fought it.  I think this is normal and healthy, to rage at the pain to some extent.  I believe that anger gives us strength to continue when we most need it.

          Chronic pain is a process, not an event.  I believe that we go through it's stages just the same as in any other life-event which causes us to grieve.  We grieve anything that causes loss.  The stages are: denial, anger, depression, bargaining, and finally acceptance.  They don't come in any particular order and we can cycle back through any of the first stages.  In my experience (and observation) of people with chronic pain, the path to acceptance doesn't really become clear for about 5 years.  This is only my own opinion.  It is different for everyone.  In those years we are really doing a lot of "work" and soul-searching.  Our lives have been irrevocably changed, and we are in a process of changing ourselves to adapt and adjust to our new circumstance.

          One of the biggest hurdles arises when our sense of self is tied to what it was we were *doing* before our lives changed.  And most of us identify ourselves by what we do, rather than by who we are.  So, not only do we have to face all the problems that chronic pain brings with it, we are also forced to take a different look at ourselves.  What we will do in the future will and must change, and who we are is the foundation on which we build.  Often we have to learn to see ourselves in a very new light.  We have to learn to change from being "John/Jane Doe" the mechanic/doctor/homemaker/breadwinner/whatever to being "John/Jane Doe" the PERSON who is good, kind, loving, caring, feeling, vulnerable - and hurting.

          Unfortunately, in this fast-paced, achievement-based society, we are often defined by others by what we do, the many roles we play:  spouse, parent, employee, etc.  When injury or illness strikes, our roles change.  We may lose our ability to work at the same job, or any.  We can't do the things with our family that we once did, or not in the same ways.  We are likely to no longer be able to keep up with the activities we once enjoyed with friends.  *Everything* changes.

          An important thing to remember is that when chronic illness or injury changes our lives, we do not lose our abilities or our intrinsic worth.  We are still just as "able" as before but, in order to realize this, we must learn how to do many of the things we once did with ease, only differently.  And there will be some things we just plain can't do any longer.  Now comes the hard part:  we go through a long process of learning and accepting our "limitations."  We become easily overwhelmed with doctors, procedures, medications, dealing with a very difficult system, our own pain, and the pain that loved ones have to go through as they also face all of this with us.  We often feel very alone and not understood, not without good reason.  We also feel very frightened on some level that we may be rejected because we are no longer able to do the things we once did.

          I was very, very angry for a long time.  I would not accept the pain.  I believed that it would go away and that life would get back to what it was before my injury.  The pain was an unwelcome guest that I believed I could evict if only I could straighten things out.  I had never before faced a problem I couldn't solve or out-maneuver.  I was used to being in control, and I thought I could wrestle my "opponent" to the ground and get on with it.  Worse, I thought that I *should* overcome the pain and that this was expected of me - again, not without good reason.

          At some point this changed.  It had to.  I had to face reality sometime.  This doesn't mean that I gave up or lost hope, it means that I stopped struggling against what I couldn't change and started building a new life in a more realistic way.  I started filling the empty spaces left by the things I could no longer do with other things.  Through trial, error, and taking risks, I discovered different ways to do many of the things I had done before.  I started educating myself about pain and learned how to talk about it.  And I learned, for perhaps the first time, how to make my wants and needs known to others without feeling ashamed, selfish, or foolish for having them.

          In short, I allowed myself to become vulnerable.  I accepted the pain as a reality I must live with.  Somehow, this gave me a new strength I didn't have before.  It gave me a place to start, something to build upon.  Yes, there were big losses:  some people couldn't accept my situation and left.  As painful as these losses were, I met new people who have enriched my life far more than it ever was before.  I lost my livelihood.  But I learned new skills and redefined my abilities and found things to do that are even more rewarding and meaningful than my previous "occupation."

          My life and relationships with others have become precious beyond words.  Because of what I've been through since my injury, I've learned to look at life and what really matters in a very new way.  I know what it is to suffer (and I never thought I'd use that word.)  But I also know in a very vivid way what it is to love and laugh and cry and care and hurt and feel who I am and who others are - just the way I am, pain and all.

          Everything has a gift buried in it somewhere, even chronic pain and disABILITY.  Our task is to find that gift and make it ours.  It will be okay, I promise.  Live in the "now" and do what you can with it.  Get the very best treatment you can no matter what it takes to find the right people to give you the care that you need and deserve.  There will be new and better treatments for us.  Chronic pain treatment is becoming a major focus in the medical community and, although some of the attitudes are archaic at the moment, I believe this is changing.  Getting adequate pain control is so necessary for dealing with everything else each day brings.  Your needs come first and that's not being selfish, it's being self-caring.

          Yes, I still get discouraged (and angry) too, from time to time.  But it doesn't last.  Even with pain, life can be good.

    Copyright © November 1997-2010 - L Randall

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    Dealing with Anger

          Dealing with the anger about suddenly finding my life changed was a difficult experience for me.   It didn't really sink in until I began to realize that my chronic pain experience was not a temporary problem but a permanent condition.   That was very hard for me to accept.  More, like many of you have related, my pain condition is the result of poor medical practice at the beginning.   As the daughter of a doctor to whom ethical and skillful practice was everything and as a person who carried that ethic into her own career in the medical field, it blew me away to wake up to the real world:   one where doctors are fallible and medicine isn't perfect.   My life had been going very well up to the time when I was injured, and I had plans for the rest of it pretty well mapped out.   Not for a moment did I believe that something like pain could change things so radically, or that medicine couldn't fix me and send me on my way.

          My expectations were unrealistic, both for myself and others.   I learned that expectations can be harmful when one gets truly tied into them.   Life is ever changing.   I had experienced and survived so many things by my 40's that I had begun to feel invincible, I suppose.   There had never been anything I couldn't handle.

    There still isn't, my experience tells me, and I credit my pre-injury-learned problem solving and coping abilities with where I am now.    But I had a lot to learn, and pain is a very demanding teacher.   My anger over my situation, which came about 3 years into it, was hard for me to handle.   I was a person who had always suppressed anger.   I had always been "nice" and accepting.   I think that my chronic pain experience eventually taught me some healthy anger behaviors.   I realized that I would have to deal with anger and my other feelings if I was to move on.

          I learned that anger is a normal - and necessary - phase in any process where one has suffered a loss of any kind.   I learned that anger can supply the necessary energy to cope, if it's handled right.   Anger can give a person the fuel to do constructive things rather than consume them and make them bitter.   But there's the catch:  if anger isn't acknowledged and dealt with appropriately, it can cause a lot of harm.   When one becomes stuck in anger (or in depression, denial, bargaining, or any of the stages of grieving), they can become destructive to themselves and to those around them.   At some point, hopefully, a person reaches acceptance and begins to deal with "what is" rather than holding on to might-have-beens.  And one allows themselves to feel the incredible sadness that comes with such a loss as disabling pain brings.   Only then could I begin to look at my options realistically.

          It is helpful to know that underneath every uncomfortable emotion lies a fear.   In my case it was the fear of losing my identity.   I had always identified myself by what I was able to accomplish.   When I became...limited in my ability to do all the things I had taken for granted before, I had to choose to move beyond my anger and make some serious changes in my life.   They didn't come easily.

          The first step to healing was to draw back and regroup myself.   I didn't have enough energy to cope with everything all at once, and you all know well that chronic pain can push you to your limits all by itself.   It becomes a time when help and support are critical.   I realized, eventually, that my anger was keeping me from being able to accept what help was being offered.   My anger narrowed my vision considerably:  I didn't see things as clearly as I might have and, so, probably closed off several options I might have looked at otherwise.   I think the fear underlying my anger at that point was of losing what control I had left over my life.

          Next I learned to let go of my unrealistic expectations.   I had to realize that medicine isn't going to "fix" me, but that there are professionals and treatments out there that can help considerably. One of my goals became to seek out competent, caring healthcare professionals who, along with me, would have my best interests at heart.   Another was to educate myself as well as I could about my condition.   Doing these things has helped a lot with defusing my anger.   Defining my needs and insisting on good treatment is a way to use that energy constructively.

          I still get angry, but I am not bitter these days.   I suppose part of the difference is that now I get angry about things I can do something about.   More important, maybe it means that I have found a kinder, gentler place to take care of myself in.   Either way, I have learned that it is the quality of my life that matters most.

    Copyright © December 1997-2010 - L Randall

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    (More to come...)

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    Last Updated February 15, 2010 by Lois Randall