People Affected by Scleroderma
A family affair……..
Elaine Furst, RN, MA
By the end of the presentation you will be
able to:
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Define who is affected by scleroderma
Define how the family is affected
Discuss the major concerns of those affected by
scleroderma
Define what “helping” means
Discuss ways relationships change
Share and discuss ways to improve living with
scleroderma in your life
Introduction
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Three principles to think about today
The Chronic Disease Principle
The Mobile Principle
The Light Bulb Principle
The Chronic Disease Principle
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Chronic disease waxes
and wanes
There’s always something
you can do when the
disease is active
Sometimes you can
prevent a flare or
complication and
sometimes you can’t
The Mobile Principle
A family or closely
connected group is
like a mobile:
When one part
is affected,
all parts
are affected
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The Light Bulb Principle
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How many
Psychiatrists does it
take to change a light
bulb?
One more thing………..
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Scleroderma has been delivered to your
door without notice and without a user’s
manual.
This package being forced on you causes
big changes and the need for adapting to
those changes
Who is Affected by Scleroderma?
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Spouses, children, grandparents
Mothers, fathers, siblings, aunts,
uncles, cousins
Employers, employees
Old and new friends
Acquaintances, storekeepers
Any others you can think of?
Major Concerns
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Concerns of the Patient
Possibility of death
Changes in face and body
Reduction or stabilization
of pain and disability
Financial concerns
Being as independent as
possible
Maintaining their roles and
status in the family and
daily life
Other family members
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Concerns of the SO
Possibility of death
Financial concerns
Helping reduce pain and
disability
Maintaining the
relationship and family
roles as they were
Fighting for the patient
(advocating with doctor,
government, ordinary
activities)
What Does Help Mean?
For the Helper
For the Helped
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Listen to me
Ask me if I need help,
don’t just do
Find out what’s
important for me to do
for myself
Be patient, be honest
(or) tell me lies
Keep a sense of humor
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I want to relieve your
pain, show me how
I want to help you be
the person you were,
help me do that
Be honest with me
about your condition
(or) Don’t tell me
Tell me some good
news sometimes
Relationships
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“The Final Frontier”
Constantly changing and (hopefully) growing
Good when built on trust and teamwork
Can be broken, even if strong, when
problems overwhelm the people involved
Can be repaired and strengthened, even if
broken, by learning new skills in order to
cope; a user’s manual!
Emotions Resulting from Loss
(From Kubler-Ross)
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Depression
Denial
Anger
Irritability
Negativity
Withdrawal from others
Fear and apprehension
Acceptance
…..And Their Possible Effects on Relationships
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Increased arguments about “nothing”
(called displacement)
Increased arguments about anything
Increased alcohol and tranquilizer use
Decreased libido
New school problems for children, new
behaviors, regression to old behaviors
More Effects………..
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Trouble sleeping
Job difficulties
Decreased appetite
Fatigue
Muscle aches
Frustration and decreased self confidence
SO is “out of synch” with patient
When do we get to acceptance?
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This is relative to what stage the disease is
in:
 Each flare may cause a “flare” in the
negative feelings and actions
 When the flare gets better, the feelings
will decrease in intensity
 Anxiety prior to annual testing can occur
When do we get to acceptance?
Acceptance is easier when the disease is
stable or the symptoms manageable
 Acceptance is easier when there is support
for everyone involved, not just the person
with SD
 Acceptance is also easier when the people
who are affected learn new skills from each
challenge
Note: Acceptance is never complete
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Now what? Here are some ideas……….
“Ten Tips for Family Caregivers” from NFCA
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Be good to your own body: nutrition, sleep, exercise help
decrease depression & increase functioning; find a friend to
exercise with.
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Recognize that new challenges require new strategies:
counseling, support groups, education
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Change your attitude: the goal is to maintain and improve quality
of daily life, not control everything (because you can’t anyway)
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Take time to NOT think or talk about scleroderma: sunsets, funny
videos, art, music
A Few Resources
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Each other
Friends, family, church
Physician/Health Care Provider
Local Scleroderma Foundation
Chapter/Support group
www.scleroderma.org
Systemic Sclerosis by Clements & Furst, 2nd
edition, Williams & Wilkins, 2004.
A Few More Resources
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Chat rooms for SOs
www.nfcacares.org
Social Services in your
hospital/community
Case Managers in your
hospital/community
Wrap-up
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A chronic disease affects the whole family
and all the people close to the family in one
way or another
Coping successfully with any new
challenge requires new skills (a “user’s
manual”)
Good communication can result in
teamwork, learning new skills together and
living well with scleroderma
You are not alone!
References
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Virginia Satir, The New Peoplemaking, Science & Behavior Books,
Inc.
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Elisabeth Kubler-Ross, www.elisabethkublerross.com
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Ginny Maril, PhDhttp://sclerodermanews.com/2016/03/16/
caregivers-dont-ignore-your-check-engine-light/
(video)
Vanessa Malcarne, Chapter 23 in Systemic Sclerosis, 2nd edition,
2006
Families Coping with Autoimmune Disease
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http://www.aarda.org/wp-content/uploads/2013/11/Families-Coping-withAutoimmune-Disease.pdf
website: www.aarda.org
Thank You!