Helping patients manage uncertainty and anxiety in MS

Uncertainty and anxiety are significant concerns for individuals living with chronic neurological conditions such as multiple sclerosis (MS). Uncertainty, defined as a state of incomplete knowledge, frequently triggers feelings of anxiety – an evolutionary response marked by worry, restlessness and heightened vigilance.

In MS, symptom unpredictability and disease variability often intensify these emotions. When persistent, anxiety can interfere with quality of life and daily functioning. Health professionals play a key role in recognising and addressing these concerns in clinical care. Anxiety is a normal and adaptive response to perceived threats. From an evolutionary perspective, our brains are primed to detect danger, which was crucial role to survival.

In modern life, particularly in the context of chronic illness such as MS, these mechanisms may become overactive, leading to chronic worry. Health professionals can help patients contextualise these responses, reduce self-blame, and employ psychological strategies to better self-manage them.

Common triggers of anxiety in MS

Clinically, the unpredictable nature of MS symptoms and the uncertainty surrounding disease progression are recognised contributors to anxiety. Many patients find themselves worrying about their future in the context of accrual of symptoms and disability, ability to meet current and future needs, and the impact of immunosuppressive therapy. Additionally, perceived stigma, or fear of becoming a burden on family or carers, can exacerbate emotional distress. It is essential for clinicians to explore an individual’s goals and fears during routine assessment

MS specialist psychologist, Seona Illalio from Livology, highlights several common symptoms associated with anxiety, including excessive worry, restlessness, irritability, concentration difficulties, and even physical manifestations such as increased heart rate and muscle tension.

Strategies for managing anxiety

1. Grounding techniques: these techniques help bring focus back to the present moment, providing relief from the constant preoccupation with future uncertainties. For example, using the five senses, and object-based awareness.
2. Breathing exercises: activating the parasympathetic nervous system through methods like diaphragmatic breathing can reduce stress and create a calming effect. Consider benefit of a health professional guiding clients through these until the client is confident using them independently.
3. Exercise: physical activity not only releases endorphins, but also reduces stress hormones, thereby improving mood and reducing anxiety. Gentle or adaptive exercise may be needed, depending on fatigue or mobility levels in MS. Consider involving a neuro physiotherapist to develop a specific exercise program the client can use during periods of heightened anxiety.
4. Mindfulness and meditation: these practices can promote relaxation, enhance self-awareness, and reduce the frequency of anxious thoughts.
5. Sleep hygiene: establishing a regular sleep routine can improve cognitive function and emotional regulation, making it easier to cope with daily challenges. For example, consistent sleep and wake times, screen minimisation, ensuring bed is used only for sleep and sex, and limiting caffeine and alcohol prior to bed.
6. Social support systems: building a network of support enhances our ability to cope with stress and provides much-needed perspective and validation. Research shows structured peer or support groups reduced isolation in chronic illness. Consider referral to organisations such as MS Plus.

Coping through communication

Health professionals can encourage individuals with MS to engage in open conversation with their family and support networks. Exploring communication preferences, coping styles, and mutual expectations can strengthen support systems and reduce relationship train. Clinicians may also play a role in facilitating or modelling effective communication strategies.

Consider the benefit of friends and family partaking in peer support, education and structured learning such as through the Navigate MS: Family & Friends course, which is delivered over two live online sessions. It provides education regarding MS, the lived experience, how to support those living with MS, how carers and friends can support themselves, and helpful strategies in providing holistic support to those living with MS.

When to seek help

If anxiety becomes overwhelming and begins to interfere with daily life, prompt referral to mental health services is recommended. Evidence-based therapies such as Cognitive Behavioural Therapy (CBT) and Acceptance and Commitment Therapy (ACT) are effective in reducing anxiety symptoms and are increasingly being applied in MS care settings.

Clinicians should be aware of local referral pathways, and the benefit of MS specialist and chronic health/disability specialist psychologists. Consider the benefit of a neuropsychologist where changes to thinking and memory may also be involved in changes to emotional wellbeing. For suggestions of practitioners with above specialties, contact MS Plus for appropriate referral pathways.

Anxiety is a common and understandable response to living with chronic uncertainty. Encouraging self-compassion and promoting proactive management strategies can significantly improve patient wellbeing.

MS Nurse Advisorsopens in new tab are a great first-point-of-call as they provide a free, phone-based service, and offer confidential and expert support with symptom management, education and care navigation.