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Chronic Disease

 
 

Chronic Disease - A Patient's Viewpoint

by James Ashdown

Being Healthy   
 
           
Since I was 16 I have developed various chronic conditions which have had a progressively disabling effect upon me.  These began with pain in my hips, extended to my feet, hands and lower back.  I also developed skin problems and fatigue associated with problems in my bowel.  Most recently I have developed serious problems with my voice.  I am now seriously disabled and unable to leave my house without assistance.  Yet I continue to work, remain active in voluntary associations and pursue an intimate and loving marriage.  So am I healthy?  I'm not quite sure how I respond to this question, I find it easier to say that I'm happy and that seems to me more important than being healthy -- even if survey after survey seems to indicate that people think health is the most important component of happiness.  But how have I reached this conviction?
Perhaps the most important step has been to resist the medical establishment.  By the medical establishment I don't mean all medics but rather the dominant medical culture, in fact non medics often hold more tightly to this culture than medics. 

As I see it this medical establishment has a number of key beliefs:
·             Happiness requires health
·            You have a duty to seek a cure
·            Diagnosis and treatment by a medical professional is the most important thing. 
I have repeatedly had the experience of being criticised for not seeking a cure even though most of my experience in so doing has been negative and more of a hindrance than a help.  People seem to find my lack of belief in a cure deeply disturbing.  Similarly I have found that professional diagnoses are not particularly useful, but what is crucial is developing a clear understanding of what I am experiencing.  I need to find a language to describe my embodied experience.  Generally this hasn't been the language of the medical establishment.  And if I don't resist their interpretations I can never find my own story.
Secondly I have developed the conviction that my disabilities are in some way a gift.  They are integral to who I am and through them I have become more in touch with my essential nature and more able to learn how to love.  Whilst they might be physically disabling, spiritually they have been liberating.  Even my longing for healing, which I certainly have, is part of the spiritual journey into which my disabilities have led me.
Awareness and acceptance.  From the spiritual point of view, and it seems to me that the spiritual point of view is always the most important despite its marginalisation by the medical establishment, the critical step is to develop an awareness of what I'm feeling in my body and a parallel awareness of the emotions that this creates.  This is absolutely the bedrock of happiness and health.  From this awareness I can begin to accept my condition not in a passive way but actively working with it to empower myself and not let anger and bitterness devour me.
Life is a journey.  For some people this is expressed through travel, their career or their family relations.  For the person with chronic illness this journey must be an interior one.  We must explore the bizarre and magical spaces of our embodied pain and struggle.  It is a dangerous journey; depression, resentment and annihilation lurk at every step but it is also, as the spiritual masters of all ages have taught us, the only journey really worth taking.  For it is this interior journey which teaches us to be truly loving and therefore fully able to relate to our fellow creatures and the whole immensity of the universe.  And if chronic pain is what has initiated me into this journey should I not welcome it?  I think I can do no other.

James Ashdown, March 2005
WholeCare Research Fellow 2006-7

 

   
   
Updated August 12, 2008