The emotional and psychological impact of multiple sclerosis relapses
Introduction
A relapse, or exacerbation, in multiple sclerosis (MS) is an acute episode of fixed duration superimposed on the underlying chronic illness, producing new abnormalities and/or significantly worsening existing ones. This event is always considered a “crisis” that disrupts the status quo for both patient and family. In addition to physical changes, patients may experience cognitive changes [1]—even in the earliest stages of the illness—and are at increased risk for depression [2]. Because these symptoms may have a profound impact on life at home and at work for long periods of time—with no predictable outcome—relapses elicit strong reactions in those affected by them [3], [4], [5], [6], [7]. Feelings commonly experienced by people with MS and their loved ones include grief, anxiety, anger, and guilt [8], [9].
Grief is a normal response to any change in physical or cognitive abilities that interferes with important activities and life goals. People need to grieve over losses before they can begin to engage in productive adaptation and problem solving.
Anxiety is a common response to the unexpected disruptions caused by a relapse, as well as to the perceived loss of control and unpredictable outcome. Anger is also a common reaction to feeling not in control of one's body and one's life and to disruption of plans and priorities.
Guilt reflects a concern about letting other people down or not “holding one's own” at home or at work, and about angry feelings (at the person who is ill, at God, at the medical team) that have no satisfactory outlet and tend to spill over onto family members and friends. Not all MS relapses are alike, however; at various points in the disease course, relapses have different meanings for patients and their families.
Section snippets
Clinically isolated syndrome
Physicians may be able to appreciate the prognostic implications of a first clinical episode when accompanied by magnetic resonance imaging (MRI) findings consistent with MS, but it is far more difficult for the patient and family to do so. Once the episode remits, the patient may return to feeling “just fine” and may even doubt that anything was ever really wrong. The physician may wish to initiate treatment based on clinical research evidence that disease-modifying agents (DMAs) delay time to
First clinical attack with a confirmed diagnosis
For many patients, the first complaints of neurologic symptoms result in a diagnosis of clinically definite MS. The medical history, neurologic exam, and appropriate testing provide sufficient evidence for the physician to confirm the diagnosis. In spite of the diagnosis, however, patients whose symptoms remit are faced with important treatment decisions that fly in the face of their emotional defenses. How many people who are feeling just fine want to embark on lifelong treatment with an
Second clinical attack
For those who were lulled into a feeling of security when the initial attack remitted, the second attack can be emotionally devastating:
- ■
“I guess I really do have MS.”
- ■
“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 illness. This requires a change in self-image—from that of an able-bodied person to
Subsequent attacks
People living with MS struggle to maintain a feeling of control in the face of an unpredictable disease course and an uncertain future. As they anticipate future relapses, they wonder what else will be taken away, what else will change, what losses they will be forced to deal with next. With each relapse, they question past treatment decisions and worry about the next steps:
- ■
“Should I change doctors?”
- ■
“Should I change my treatment?
- ○
Switch medications?
- ○
Combine medications?
- ○
Give up on DMAs altogether?
- ○
- ○
Impact on the family
MS relapses affect not only the patient, but family members as well. The feelings of grief, anxiety, anger, and guilt are experienced by all; the challenge lies in the fact the each person's reactions may be experienced in different ways at different times [8], [9]. One person might react initially with anger while another might feel sad. Given that no 2 people experience or express their feelings in exactly the same way, family members may feel completely “out of sync” with one another.
Implications for clinical care
Physicians and other health professionals can facilitate people's efforts to understand and cope with MS relapses. The first step is to provide patients and family members with information about disease activity and progression. The National MS Society website offers a “Spotlight on Exacerbations” (http://www.nationalmssociety.org/exacerbation) that people can access to learn about how relapses are identified and treated, as well as the kinds of symptoms that may occur. Periodic conversations
Acknowledgements
This supplement was supported by an educational grant from Teva Neuroscience. BioScience Communications contributed to the editorial refinement of this article and to the production of this supplement. Authors may have accepted honoraria for their supplement contributions.
References (19)
- et al.
Relationships among illness uncertainty, stress, coping, and emotional well-being at entry into a clinical drug trial
Appl Nurs Res
(1996) - et al.
Restless sleep, illness intrusiveness, and depressive symptoms in three chronic illness conditions: rheumatoid arthritis, end-stage renal disease, and multiple sclerosis
J Psychosom Res
(1993) Effect of early interferon treatment on conversion to definite multiple sclerosis: a randomized study
Lancet
(2001)- et al.
Psychiatric side effects of interferon-beta in multiple sclerosis
Eur Psychiatry
(2006) - et al.
Neuropsychological deficits in multiple sclerosis after acute relapse
J Neurol Neurosurg Psychiatry
(1998) - et al.
Disease activity and emotional state in multiple sclerosis
Ann Neurol
(1983) - et al.
Examining the impact of illness representations on psychological adjustment to chronic illness
Health Psychol
(1998) - et al.
Psychosocial impact of illness intrusiveness moderated by age in multiple sclerosis
Psychol Health Med
(1996) - et al.
Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis
J Nerv Mental Dis
(1993)
Cited by (50)
Loss of Tyro3 causes anxiety-relevant behavioural changes in female mice
2023, Brain ResearchThe influence of disease-modifying therapy on hidden disability burden in people with newly diagnosed relapsing-remitting multiple sclerosis
2022, Multiple Sclerosis and Related DisordersDecision-making about corticosteroids in relapses of multiple sclerosis – development of a questionnaire based on the theory of planned behaviour
2021, Multiple Sclerosis and Related DisordersEarly initiation of fingolimod reduces the rate of severe relapses over the long term: Post hoc analysis from the FREEDOMS, FREEDOMS II, and TRANSFORMS studies
2019, Multiple Sclerosis and Related DisordersCitation Excerpt :In a sub group analyses of non-completers in the TRANSFORMS study, patients who were initially randomized to fingolimod had a lower ARR than those who had been randomized to IFN in the core study, confirming the benefits of early initiation of fingolimod treatment for relapse control (Cohen et al., 2016). Patients with RRMS experience restrictions in daily activities and reduced functional ability, resulting in compromised health-related quality of life, eventually leading to increased economic burden (Halper 2007; Kalb 2007; Oleen-Burkey et al., 2012). Severe relapses lead to higher healthcare resource utilization and cost, which contributes to the significant economic burden for patients with RRMS (Raimundo et al., 2013).
Benefit evaluation in multiple sclerosis relapse treatment from the patients’ perspective – Development and validation of a new questionnaire
2019, Multiple Sclerosis and Related DisordersComparative efficacy of disease-modifying therapies for patients with relapsing remitting multiple sclerosis: Systematic review and network meta-analysis
2016, Multiple Sclerosis and Related Disorders