THE PAIN OF HIV: Mind, Body

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THE PAIN OF HIVMind, Body Spirit27 August
2003

• The Very Rev. Drew A. Kovach, M.D., M.Div.,
• Director of HIV Services,
• Kaiser Permanente Hawaii
• dkovach_at_hawaii.rr.com
• [phone]

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WHO I AM WHAT I DO

• 30 years a Family Practice Physician
• Medical School Faculty and Residency Director
• Solo Private practice primarily gay and lesbian
  medicine and HIV
• FP in a multi-specialty group specializing in HIV
  medicine
• 27 years an ordained priest
• A man taking care of people living with HIV for
  over 20 years with a multi-level view of health,
  wholeness and wellness

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CONCEPTS OF WHOLENESS WELLNESS MY BIAS

• Whole people
• Body
• Mind
• Spirit
• Whole lives
• Levels of Healing
• Life being livable not just being alive
• A good life

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HIV/AIDS

• The most comprehensive chronic disease
• Impacts all aspects of a persons life
• Social
• Economic
• Physical
• Emotional
• Spiritual
• With an uncertain future

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Holistic Approach

• Mind, Body, Spirit The trinity of man
• 3 Spheres
• Dis-ease, distress or pain in any one affects the
  other two
• Managing whole people to make people whole

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Care Barriers

• Social Factors
• Cultural Factors
• Language Factors
• Religious Factors
• Economic Factors
• Physiological Factors
• Psychological Factors

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Treat the Whole Person

• Not just treating numbers or lab values
• Not just treating with pills
• Not just treating only the symptoms
• Not just treating stereotypes
• Not just treating to make ourselves feel better
• Not just treating the mind and the body

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Quality vs. Quantity of Life
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Access the Patient and Ourselves

• Meeting people on the road where they are, not
  where we think they should be
• Admit our own bias and prejudice and frustration
• Admit that how we feel will affect how we treat

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The Pain of HIV

• World Pain of HIV
• Physical Pain of HIV
• Emotional Pain of HIV
• Spiritual Pain of HIV

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WORLD PAIN OF HIV
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ONE SMALL VIRUS...
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ONE LARGE WORLD
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Adults and children estimated to be living with
HIV/AIDS as of end 2002
Eastern Europe Central Asia 1.2 million
Western Europe 570 000
North America 980 000
East Asia Pacific 1.2 million
North Africa Middle East 550 000
South South-East Asia 6 million
Caribbean 440 000
Sub-Saharan Africa 29.4 million
Latin America 1.5 million
Australia New Zealand 15 000
Total 42 million
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WORLD STATISTICS

• 42 million people are infected
• 29.4 million are in Sub-Saharan Africa
• 3.1 million people have died from HIV/AIDS in
  2002
• 95 from developing countries

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AFRICA STATISTICS

• Twice the number of people killed on
  9-11 die in Africa daily from AIDS
• At present In Botswana 1 in 3 are HIV positive
  and 42 of pregnant women are HIV positive
• Women make up 55 of those infected in
  Sub-Saharan Africa
• The probability of death by 15 years is over 50
  in South Africa

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USA ESTIMATES OF HIV INFECTED PERSONS

• USA 850,000 to 950,000 persons infected
• 180,000 to 280,000 undiagnosed
• 230,000 not under care
• 50,000 new cases this year
• 17,200 deaths this year

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PHYSICAL PAIN OF HIV
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Physical Pain of HIV

• Abdominal pain 25
• Peripheral Neuropathy 25
• Headache 25
• Tension 63
• Drug induced 20
• Migraine 17
• Muscle and Joint pain 25

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Physical Pain of HIV

• Nociceptive Pain
• signals tissue injury (trauma, thermal,
  mechanical or chemical) through nerves and
  central pathways that are otherwise normal
• Neuropathic Pain
• arises because of dysfunction in peripheral
  nerves or the central nervous system
• Idiopathic Pain
• occurs without, or out of proportion to, known
  organic pathology

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EMOTIONAL PAIN OF HIV
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Emotional Pain of HIV

• Heart ache vs. Chest Pain
• Who is on your back vs. Back Pain
• Worn out vs. Fatigue
• Relationship
• With yourself
• With others
• With God

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Emotional Pain of HIV

• Partner Issues (past, present, future)
• One partner positive, the other negative
• Both positive
• No partner
• Parents and Family Issues (past,
  present, future)
• Friends and co-worker Issues (past,
  present, future)

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Emotional Pain of HIV

• Financial Issues (past, present, future)
• Job Issues
• Feeling of self-worth, pulling your own weight
• Identity
• Common ground with others. What do you do?

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Emotional Pain of HIV

• Living with a chronic potentially fatal disease,
  in otherwise young healthy people, with an
  uncertain future
• Pill Burden
• Number (PI vs. NNRTI regimens)
• Timing (complex regimens)
• Constant reminder

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Looking Good, Feeling BadThe disconnect
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Emotional Pain of HIV

• The Follow-up Burden
• Frequent labs and other tests
• Frequent office visits
• Multiple sources of treatment and care
• Refilling prescriptions

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Emotional Pain of HIV

• The Burden of not feeling normal
• Effects of the disease
• Effects of the treatments
• We ask our patients to get used to not feeling
  well and to tolerate side effects
• The Burden of not looking normal
• Lipodystrophy and wasting syndrome

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Emotional Pain of HIV

• No end to the therapy in sight
• The uncertain future
• of successful therapy?
• of long term side effects from the therapy?

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Emotional Pain of HIV

• HIV vs. Cancer Model
• Cyclic vs. Continuous chemotherapy
• How long will the remission last?
• What do I do if and when it comes back?
• Do I even want to treat it?
• Will you help me with the pain?

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The Result of Emotional Pain of HIV

• ANXIETY and DEPRESSION
• The Twins Never separate
• All individual with HIV will become clinically
  depressed early, middle or late but it will
  come!
• Patient doctor need to recognize it
• Tools Anxiety and depression inventories (Beck,
  Hamilton etc.)

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The Treatment of the Emotional Pain of HIV

• Treat or Refer But Do Something!
• Anti-anxiety agents
• Antidepressants
• Psychotherapy
• Individual
• Group

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The Treatment of the Emotional Pain of HIV

• Behavioral Therapies
• Hypnosis
• Biofeedback
• Jacobson Progressive Relaxation
• Cognitive Behavioral Management

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SPIRITUAL PAIN OF HIV
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What Is Spirituality?
It is NOT Religion!
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Spirituality Explored

• The Big Picture
• Meaning beyond matter
• What matters
• Serenity
• Inner self in continuity with known and unknown
• Forgiveness

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Spirituality Explored

• Intimacy with God, Allah, Yahweh, The Source,
  The Creator, The Buddha, The Christ, The Higher
  Power, The Absolute, The Life
  Force
• Faith
• The inter-connectedness of existence
• Humility
• Something beyond ourselves

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Spirituality Explored

• The answer to all questions
• Vulnerability
• Cumulative wisdom of energy and nature
• Vitality
• Personal in definition
• Justice
• That which gives life

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Spirituality Explored

• Meaning
• Water, warmth and light
• Grace
• The intersection of meaning and love
• Power
• Where we fit
• Purpose

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Spirituality Explored

• Who I am
• Why I am
• Unique
• Inherent
• The boundary surrounding the illusion of control
• Frightening

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Spirituality Explored

• Take a deep breath
• Inspiration
• Confidence in the inevitability of joy
• Filling
• Fulfilling
• Fullness of life
• Full of grace

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WHAT THEN IS IT?

• It is core
• It is essence
• It is inspiration
• IT IS LIFE

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Soul as in Sol.
Sol as in Sun.
Sun as in Light.
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Spiritual Sources

• The patient
• The provider
• The partner/spouse
• The family
• The community of faith
• The cosmos
• The God of Creation

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Spiritual Pain of HIV

• Purpose of life
• Beyond ourselves
• Hole in the heart
• Guilt and Judgment
• Redemptive suffering
• Relationships with people and with God

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Spiritual Pain of HIV

• Guilt about lifestyle choices
• Judgmental churches
• No support for gay, lesbian, bisexual,
  transgender people
• No support of same sex relationships
• Guilt and judgment about having HIV (Gay
  Plague)

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The Result of Spiritual Pain of HIV

• Feeling abandoned by God
• Feeling a sense of condemnation
• Feeling alienated from religious people
• Feeling helpless and hopeless
• Feeling worthless
• Feeling bad

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Treatment of Spiritual Pain of HIV

• Treat or Refer But Do Something!
• Acknowledge the pain is real
• Pastoral care to find Spiritual peace
• Tolerant, inclusive congregations
• The Sacraments (Religious Actions)
• Communion, The Mass, Divine Liturgy
• Confession and forgiveness
• Anointing with prayers for healing
• Prayer and meditation

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Treatment of Spiritual Pain of HIV

• Inspirational books and articles
• Inspirational writings by people living with HIV
• Websites
• Spiritual support groups
• My Prescription for Spiritual Wellness

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Prescription for Spiritual Wellness

• Meaning in life involves finding the greatness
  hidden inside of us.
• Purpose in life is determined by how we use this
  greatness.
• Faith is to believe that greatness can be
  embedded within the frailty of our own
  fallibility.

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Prescription for Spiritual Wellness

• Serenity involves using our goodness to pursue
  meaning until moments of greatness reveal
  themselves to us.
• Courage is to recognize moments of greatness when
  they occur, despite personal cost.
• Dissonance lingers in the state of unvisited
  expectations of greatness.

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Prescription for Spiritual Wellness

• Grace is to understand that our greatness does
  not belong to us, simply because it is inside of
  us.
• Perspective is gained with understanding that
  greatness does not extinguish or diminish with
  passing of time or opportunity.

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Prescription for Spiritual Wellness

• Wisdom is approached when we understand that we
  do not have the latitude to choose which
  greatness is ours or how large our greatness is.
• Simplicity involves not trying to make someone
  elses greatness our own.
• Power in life is revealed when we recognize
  greatness hidden inside of every being.

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Prescription for Spiritual Wellness

• Joy resides in appreciation of the greatness of
  others.
• Love is discovered when we help another find
  their greatness and to accept their help in
  finding ours.
• Peace in life occurs when we recognize that
  regardless of whether we discover our greatness
  we are still loved by our God.

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All Pain Of HIV Has To Be Managed

• Spiritual
• Emotional
• Physical
• Making people whole requires a holistic approach

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The Parable of theStonecutters

• The power of meaning
• to transform the experience
• of life

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What is it like to live
with AIDS?
In their words
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  David Taylor Sherman Oaks, California
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Tom Connor Santa Fe, New Mexico
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Linda Jordan West Hartford, Connecticut
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Joel Arce, Luis Arce, Angel Glover, Steve Koceja
and Noel Arce New York, New York
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Diana Hindrew Denver, Colorado
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Mike Carver Honolulu, Hawaii
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All Gods Blessings
Thank you