Why is Multiple Sclerosis So Disruptive? Initial and Secondary Challenges
Konstantinos Dimitrios Kostas, PhD
This article continues a series of articles written for health care professionals about the biopsychosocial concomitants of multiple sclerosis (MS) and will address the challenges that many people with MS encounter during the course of their illness. The Spinal Cord Disorders article for the next edition of SCI Psychosocial Process will examine the psychological sequelae of these challenges and the following issue will highlight points for staff to consider when working with patients with MS and their family.
MS is a chronic, potentially disabling disease of the central nervous system: the brain, spinal cord, and cranial nerves; that damages the myelin surrounding the CNS nerve fibers. Thanks to the advent of magnetic resonance imaging (MRI), most people are being diagnosed with MS more reliably than ever before and are being started on one of five medications: Avonex, Betaseron, Copaxone, Rebif or Tysabri, several of which have been shown to slow the progression of the disease and to reduce the number of lesions seen on MRI. Despite these advances, there is no way to predict whether the course of their MS will be relapsing- remitting, primary-progressive, secondary-progressive, or progressive-relapsing––leaving individuals to cope with a constant state of uncertainty. Although specific symptoms, such as sensory changes, fatigue, spasticity, weakness, or imbalance vary from person to person, symptom presentation is unpredictable and can yield what is often felt to be a seemingly random display of exacerbations and remissions.
Regardless of one’s individual circumstances, those who are newly diagnosed with MS often find themselves struggling with the notion that they have a chronic, incurable disease that is shrouded in ambiguity: no one can tell them how they acquired it, how bad it will get, and what aspects of their lives will be affected by it, or when. Compounding these issues are the biological, psychological, cognitive, and social challenges they may encounter after they are diagnosed, during an exacerbation, or during a remission. For some, an exacerbation and the challenges it imposes can trigger a flood of emotions, many of which are reminiscent of what was experienced when they were first diagnosed. The same holds true for remissions, especially if one’s recovery from a relapse is incomplete.
Although I refer to the first set of these challenges as initial, they may present themselves at any point during the course of a person’s illness.
INITIAL CHALLENGES
Medical and Psychological Challenges: “Nothing feels the same anymore”
• Mourning the loss of physical health and well being:
Going to the doctor’s office or hospital and having a scan becomes the norm rather spinal cord disorders than the exception.
Having to administer medication 1 to 3 times a week.
Fearing that nothing can be planned for more than a few days in advance.
Not being able to participate in one’s usual activities.
Critically reviewing the way one took care of oneself, such as diet or exercise: “I thought I did everything right. Now I have MS.”
• Becoming a personal health care advocate and an expert about one’s MS: . Finding a doctor one feels comfortable working with who specializes in MS.
Dispelling preconceived notions about MS.
Identifying the biological, psychological, and cognitive changes that are associated with MS: when should a doctor be called?
Learning how to interpret the legitimacy of treatments suggested by friends, family, or internet Web sites.
• Understanding and tolerating one’s emotional reactions and responses:
Relieved at being diagnosed with a disease, even if it is MS, after a time of uncertainty, but frightened and confused by its meaning.
Feeling more emotionally stirred-up; for instance, more depressed or anxious than usual and trying to understand why.
Examining the role that stress plays in life and finding new ways of managing it. . Seeking a deeper meaning in life. Spirituality may take on new meaning.
The present may become more important than the past or the future.
Assessing one’s priorities and finding that what was once important may no longer be.
Personal and Financial Challenges: “Life goes on despite my MS” • Bills continue to come in, children continue to clamor for attention, and people who were dependent on a person prior to diagnosis continue to be.
• Employment concerns:
• Having to maintain full or part-time employment despite the limitations imposed by MS.
• Filing for disability. When and how to begin the process.
Relationship Challenges: “Do people understand what’s going on with me?”
• “Strength” may need to be re-defined:
Being strong may no longer mean going it alone.
Relying on family and friends for basic needs.
Reactions of family and friends:
People may no longer ask how one is doing unless it has to do with MS. Even answering the basic question, “How are you doing?” can be a challenge.
Others may act as if things are “normal” when the person with MS knows that they are not. This puts the burden of explaining one’s disease on the person who has it.
Impact on interpersonal relationships: friendships may change, sexual intimacy may take on new meaning.
Challenges Specific to an Exacerbation
• Ways that people cope with having MS, such as denial or suppression may be challenged: “Now something is wrong that warrants medical attention”.
• One often waits for an exacerbation before deciding to take medication. Medications can introduce a new set of challenges including side-effects.
• An exacerbation can result in a sign or symptom that is more “visible” to others: “Now I have to explain my condition to them”.
• There are physical and psychological stresses associated with waiting for the symptom(s) to go away.
Challenges Specific to a Remission
• When in remission for months or years, an individual may expend a great deal of psychological energy “waiting for” the next exacerbation.
• Becoming “familiar with the unfamiliar”: is there lasting impairment that challenges one to accept a new “normal” way of feeling?
It is imperative for health care providers to consider these challenges as they work with people who have MS across the disease spectrum. Doing so will enable them to better validate their patient’s concerns, normalize their reactions, and reduce the stress associated with such a complicated disease.
Konstantinos Dimitrios Kostas, PhD, is a clinical psychologist at the Chicago Institute of Neurosurgery and Neuroresearch, Chicago, Illinois. He holds an academic appointment in the University of Chicago Hospital’s Department of Psychiatry and is a consultant to the Multiple Sclerosis Center at Rush University Medical Center, Chicago, Illinois.