The Psychosocial Impact of MS Exacerbations

An exacerbation is like an acute illness superimposed on a chronic one

An exacerbation is always a “crisis” 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 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 “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 “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 “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” In a small study of children who have a parent with MS, a common response to the question “How can you tell a person has MS?” was “It makes mom very cranky.” Here’s one child’s depiction.

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/problem-solving

National MS Society Resources for Patients 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