The Psychosocial
Impact of MS
Exacerbations
An exacerbation is like an acute illness
superimposed on a chronic one
An exacerbation is always a “crisis”
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Worsens old symptoms or produces new ones
Involves a choice to treat or not
Disrupts the status quo
Produces a ripple effect for the individual & family
Elicits strong emotions in all concerned
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Normal grieving
Anxiety
Anger
Guilt
• Has an uncertain outcome
Implications for daily life
• Major life activities are interrupted.
• Cognitive changes may appear or worsen during
an exacerbation, even early in the disease.
• People are greater risk for depression during
exacerbations, even early in the disease.
• Corticosteroids can affect mood and cognition.
• The individual may be called upon to make
decisions when least able to.
Not all exacerbations are alike
• Clinically-isolated syndrome
• First clinical attack with confirmed
diagnosis
• Second clinical attack
• Subsequent attacks
Clinically-isolated syndrome
• Has more meaning for the clinician than the patient
 MRI findings vs. symptoms
• Poses difficult treatment choices
 Initiating treatment begins the adaptation process
- Redefining the self and the family
- Acknowledging uncertainty and
unpredictability
 Declining treatment increases future risk
- Family members may not be in agreement
First clinical event with confirmation of dx
• Diagnosis is confirmed but most symptoms remit
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“I can beat this if I just try hard enough!”
“I’ll be the lucky one.”
“It was probably nothing.”
“The doctor has made a mistake.”
“I don’t need to start treatment yet.”
Although this kind of denial can be very adaptive at the
moment of crisis, it may interfere with a person’s ability to
make appropriate treatment decisions and sets the person
up for feelings of guilt and failure when the disease
progresses.
Denial is aided and abetted by family,
friends, and colleagues
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“I’m so glad you’re better.”
“You look just like your old self again.”
“We knew you could beat this.”
“You couldn’t possible have MS.”
“Why would you want to start taking shots?”
These comments reflect people’s need to reassure
themselves as much as the person with MS.
The second exacerbation can be
devastating
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“I guess I really do have MS.”
“I guess the doctor was right after all.”
“I’m going to end up in a wheelchair.”
“Life will never be the same.”
“No one will want me.”
“There go my dreams for….”
People begin to acknowledge the end of life as
they knew it and the beginning of life with a
chronic disease.
Searching for an explanation of the
unexplainable
• Taking blame
 “I must have done something really bad to deserve
this.”
 “I guess I didn’t try hard enough.”
 “I wasn’t strong enough to fight this.”
 “I must have too much stress in my life.”
 Mommy—did I make you sicker?”
• Being blamed
 “What did you do/not do to make this happen to
you?”
• “This is God’s plan for me.”
There is a tendency for people to blame themselves
and/or be blamed by others; the need for education is
paramount.
Starting a disease-modifying therapy
• Starting treatment = admitting the diagnosis
• Injecting a medication is a frequent reminder of
disease, but doesn’t make the person feel better or
promise a positive outcome
• An individual never really knows whether the
medication is working
• Disease-modifying therapies are expensive
Family members still may not be in agreement.
Other exacerbations thereafter
• Struggling to feel control over the unpredictable
• Waiting to see “what will be taken away next”
• Making difficult decisions about treatment
 Change doctors
 Alter disease-modifying therapy: switch, combine,
discontinue
 Turn to miracle “cures”
• Facing difficult lifestyle decisions/re-defining self,
control, independence
 Making accommodations/using adaptive devices
 Making changes at home and work
Family members still may not be in agreement
Reactions of People with MS and Their
Family Members
• Anxiety—common reaction to unpredictability and loss
of control
• Anger—common reaction to unpredictability and loss of
control
• Guilt—relating to “not pulling one’s own weight” and to
angry feelings that have no acceptable outlet
• Grief—normal reaction to change and loss
Each in his/her own way, and in his/her own time—
challenging family communication and shared
problem-solving
Emotional Impact on the family
• Couples
 Communication
- Impacted by emotional issues, coping styles, cognitive sx
 Intimacy
- Impacted by caregiving activities/role changes, sexual
dysfunction
 Shared-problem solving
- Impacted by communication issues, cognitive sx,
depression
Communication, intimacy, and shared
problem-solving are threatened just when
they are most needed
Impact on the family, cont’d
• Children
 Concerns about sx/hospitalizations/medications
 Easy targets for parents’ emotional overload
 Increased responsibilities
• Parents
 Anxiety over adult children’s self-care
“The Very Nervous System”
Recommended interventions
• Provide education about disease
activity/progression
• Screen for depression; cognition
dysfunction
• Discuss treatment plan: short-, long-term
• Provide emotional support
• Help patients mobilize resources
• Encourage effective planning/problemsolving
National MS Society Resources for Patients
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My Life, My MS, My Decisions
(www.nationalMSsocidty.org/mylifemymsmydecisions).
Online classes to help people boost their decision-making
power.
 Teaming Up with Your Healthcare Providers
 Navigating the Medication Maze
 Considering Clinical Trials
 Achieving Optimal Wellness
Knowledge is Power
www.nationalMSsociety.org/knowledge). A free, at-home,
six-part educational series for people newly diagnosed
with MS