Living with multiple sclerosis (MS) is a bit like learning to navigate an ocean with unpredictable weather. There are days of calm, where everything seems under control, and days of storm, where the waves of physical symptoms, fatigue, and uncertainty threaten to overwhelm you. While much is said about the physical impairments of the disease, its psychological and cognitive dimension often remains in the shadows, like a powerful but invisible undercurrent. Yet, it is this dimension that can most affect your quality of life, your relationships, and your overall well-being.
This is where two key figures in your care journey come into play: the psychologist and the neuropsychologist. Far from being a sign of weakness, reaching out to them is a proactive and courageous step. It is deciding to take the helm, to better understand the currents that stir you, and to learn to navigate with more serenity, even when the sea is rough.
The announcement of the diagnosis is often a true earthquake. It disrupts your certainties, your plans, and your perception of the future. The emotions that arise are not a sign of fragility, but a human and normal reaction to an extraordinary situation. Understanding these emotions is the first step to learning to live with them.
The Shock of the Announcement and the Acceptance Process
Receiving a diagnosis of multiple sclerosis is a bit like receiving a new world map, a map on which the known territories have changed and where new areas of shadow have appeared. The first reflex is often denial or misunderstanding. “Why me?”, “The doctors may have made a mistake.” Then, anger against the injustice of the disease may arise, sadness in the face of potential losses (a career, hobbies, a certain carefreeness), and fear of the future.
This process resembles a grieving process: the mourning of a “before” life, without the disease. It is a personal journey, with ups and downs, and there is no right or wrong way to go through it. The important thing is not to remain alone with these emotions.
Anxiety and Depression: Common Companions
Uncertainty is one of the most challenging characteristics of MS. The unpredictability of relapses, the fluctuation of symptoms, the fear of disease progression… All this creates fertile ground for anxiety. This anxiety can manifest as constant worries, physical tension, difficulties sleeping, or a tendency to “catastrophize” the slightest new symptom.
Depression is also a reality for many people with MS. It is not just a psychological reaction to the difficulty of living with a chronic illness. The disease itself, through the inflammatory processes it generates in the brain, can directly affect mood circuits. It is therefore crucial not to trivialize it by considering it a mere “down period”. Persistent sadness, loss of interest in activities you once enjoyed, a feeling of hopelessness are signals that should alert you.
Managing Stress and Self-Image
MS can transform your relationship with your own body. Fatigue, walking difficulties, pain, or tremors can make you feel betrayed by a body that no longer responds as it used to. Self-image can be profoundly affected, leading to a loss of confidence and withdrawal. Chronic stress, whether related to managing symptoms, professional constraints, or social relationships, often adds to this burden, acting as fuel for fatigue and potentially influencing disease activity.
The Role of the Psychologist: Support to Navigate the Emotional Storm
The psychologist is a mental health and emotions expert. Their role is not to “cure” you of your emotions, but to provide you with the tools to better understand, accept, and manage them. They offer you a confidential and caring listening space, a safe harbor where you can speak freely, without fear of being judged or worrying your loved ones.
Active Listening and Validating Your Emotions
The simple act of being able to put words to what you feel, to tell your story to someone external and neutral, can be profoundly liberating. The psychologist helps you untangle the thread of your thoughts and emotions. They validate what you are experiencing: yes, it is normal to feel angry; yes, it is legitimate to be afraid. This validation is essential to stop fighting against your own feelings and start composing with them.
Therapies to Develop Coping Strategies
The psychologist does not just listen. They offer you concrete approaches to feel better. Among the most commonly used, Cognitive and Behavioral Therapies (CBT) are particularly effective. The idea is simple: our thoughts influence our emotions, which in turn influence our behaviors.
- Thought: “I forgot an appointment, my memory is shot, I will never be able to work properly again.”
- Emotion: Anxiety, sadness, discouragement.
- Behavior: Avoiding taking on new responsibilities, withdrawing.
In CBT, the psychologist helps you identify these automatic and negative thoughts to replace them with more realistic and nuanced thoughts. For example: “I forgot an appointment, that’s frustrating. It’s a symptom of my illness. I will implement a new strategy, like setting an alarm on my phone, so this doesn’t happen again.” This change in perspective, little by little, allows you to regain control and break the vicious cycle of anxiety or depression.
Helping with Acceptance and Self-Reconstruction
Accepting the illness does not mean giving up.
The psychologist accompanies you on this journey to integrate the illness into your identity without it entirely defining you. You are not “multiple sclerosis”; you are a person living with MS. Together, you explore new ways of being, new projects, new sources of satisfaction to rebuild a life balance that makes sense for you.
Cognitive Disorders: The Hidden Part of the Iceberg
If fatigue is the most well-known invisible symptom of MS, cognitive disorders are the most unknown and taboo aspect. They affect more than half of patients at some point in their journey. They are often compared to the submerged part of the iceberg: invisible from the outside, they are massive and can have a considerable impact on daily life.
What Are the Most Common Disorders?
These difficulties are not related to a decrease in intelligence. They affect specific brain functions. Imagine your brain as a very efficient office. Sometimes, due to MS, certain departments of this office operate at a slower pace.
- Information Processing Speed: You feel like your brain is “skidding”. Following a fast conversation in a group, understanding a complex explanation, or reacting quickly becomes difficult.
- Memory: This mainly concerns working memory. You forget what you just read, lose the thread of your thoughts, forget where you placed your keys, or whether you took your medication.
- Attention and Concentration: You have trouble staying focused on a task, whether it’s reading a book, watching a movie, or working on a file. You are easily distracted by noise or movement around you.
- Executive Functions: These are the skills of the “conductor” of your brain. Planning a day, organizing multiple tasks at once (like preparing a meal), making decisions, or adapting to an unexpected event becomes a real challenge.
The Impact on Professional and Personal Life
These disorders can be a source of great frustration and misunderstanding. At work, they can lead to mistakes, difficulties meeting deadlines, and mental exhaustion. In personal life, they can create misunderstandings with loved ones, who may interpret forgetfulness as a lack of interest. Socially, the difficulty in following conversations can push you to isolate yourself. This “brain fog” is exhausting and can deeply undermine your self-confidence.
The Neuropsychologist: Your Architect for Restructuring Your Cognitive Functions
In the face of these difficulties, the neuropsychologist is your privileged interlocutor. They are a psychologist specialized in the links between the brain and behavior. While the psychologist helps you manage the emotional storm, the neuropsychologist is like an architect who helps you restructure your “office” in the brain to make it more functional and efficient.
The Neuropsychological Assessment: Mapping Your Strengths and Weaknesses
The first step is to conduct an assessment. This is not an exam to judge you, but a precise “snapshot” of your cognitive functioning at a given moment. Through a series of tests (memory games, attention exercises, problem-solving), the neuropsychologist will objectively evaluate your various cognitive functions.
This assessment is very valuable. It allows you to put words to diffuse difficulties, to understand what relates to MS, fatigue, or anxiety, and above all, to identify not only your weaknesses but also your strengths, on which you can rely.
Cognitive Remediation: Tailored Training
Once the assessment is established, the neuropsychologist can propose a cognitive remediation program. It’s a bit like physiotherapy for the brain. It involves personalized training, with targeted exercises on paper or on a computer, aimed at stimulating and improving the functions that pose a problem for you. The goal is to strengthen neural circuits and improve your performance.
Compensatory Strategies: Tools for Daily Life
Sometimes, it is not possible to completely “repair” a function. The neuropsychologist’s job is then to teach you how to “smartly circumvent” it. They help you develop compensatory strategies to make life easier. These are concrete and practical techniques. For example:
- For Memory: Use an agenda (paper or electronic) consistently, set alarms on your phone, have a “unique place” for important items (keys, wallet), use mnemonic devices.
- For Attention: Work in a quiet environment, do one thing at a time (avoid multitasking), break down large tasks into smaller, more manageable steps, take regular breaks.
- For Organization: Make lists, plan your week in advance considering fatigue, prepare your things the night before for the next day.
Digital Tools to Support You Daily
In addition to follow-up with these professionals, technology today offers innovative solutions to help you take care of your cognitive and emotional health independently. These tools do not replace a professional, but they are designed to be valuable allies in your everyday life.
Tailored Brain Training: Edith & Joe to the Rescue
Regular cognitive training is essential to keep your brain active and agile. It is with this in mind that we developed Edith & Joe, our tailored brain training programs. Unlike many mainstream applications, Edith & Joe have been specifically designed for people facing cognitive difficulties.
- Personalized Content: The games and exercises are designed to specifically stimulate memory, attention, language, logic, and executive functions. The difficulty level automatically adjusts to your performance to offer you a stimulating but never discouraging challenge.
- Accompanied Use: These programs are used by many patients directly at home, to train at their own pace. But they are also a choice tool for professionals. Many speech therapists and neuropsychologists integrate Edith & Joe into their cognitive remediation sessions. This allows them to track your progress, personalize your program, and link the exercises to your concrete daily goals.
- A Fun Approach: Training becomes a moment of pleasure. The exercises are presented in the form of cultural and fun games, which fosters motivation and commitment, two essential keys to achieving results.
Imagine being able, through a game on your tablet, to work on your ability to plan a series of tasks or memorize a shopping list, all in collaboration with your therapist. This is the promise of Edith & Joe: to make cognitive stimulation an accessible, effective, and engaging process.
Our Applications: Accessible Support at Your Fingertips
Beyond cognitive training, we offer a range of applications designed to support you in the overall management of your health. They can help you track your symptoms, manage your energy, remind you of your medication intake, or practice relaxation or mindfulness meditation exercises to better manage stress and anxiety. These applications act as a digital logbook, a pocket coach that helps you become an even more informed and autonomous actor in your care journey.
In conclusion, facing the emotional and cognitive impact of multiple sclerosis is not a fatality. Seeking help from a psychologist or neuropsychologist is not an admission of failure, but rather the greatest proof of your strength and your will to improve your quality of life. These professionals are here to equip, guide, and support you. Combined with personal strategies and innovative digital tools like our Edith & Joe programs, this support can help you better understand the currents of the disease, not to constantly fight against them, but to learn to navigate with them, and to stay on course towards what truly matters to you.
Our guide to supporting people with Multiple Sclerosis can be found at the following address: https://www.dynseo.com/la-reeducation-cognitive-lorsque-lon-est-atteint-dune-sclerose-en-plaques/.
