Living with multiple sclerosis (SM) is not easy at all. This neurological condition occurs when the immune system no longer works properly.
Specifically, if normally it has the role of protecting us and fighting diseases and infections, in multiple sclerosis the immune system gets to mistakenly attack the nerves.
As the nerves extend throughout the body, the symptoms can be very varied and can affect several areas of the body. In addition to the direct clinical impact, the disease brings with it personal challenges, often invisible, difficult to explain or to understand for others.
Life with multiple sclerosis: between uncertainty and adaptation
Over 2.9 million people live with multiple sclerosis globally, according to the International Federation of multiple sclerosis, confronting daily challenges and symptoms that are more unpredictable. The disease can affect the motor, cognitive, sensory, emotional or visual functions. The diagnostic process is, in itself, a fairly complicated and demanding one, requiring an extended series of imaging investigations, laboratory analyzes and clinical evaluations.
SM manifests differently from person to person, in chickens, and the most common symptoms include: sensitivity disorders (such as numbness), motility impaired (muscle weakness, paralysis), visual disorders, difficulty coordinating and the impossibility of making certain movements. Symptoms associated with brain trunk, such as double vision, facial paresis or dizziness may also occur. In addition, it may also be other types of disorders – including cognitive deficits and various sensory abnormalities.
Unfortunately, there is no curative treatment, but multiple sclerosis can be managed effectively throughout life. With an adequate therapeutic plan and with the support of a reliable medical team, the evolution of the symptoms can be kept under control.
Fears and limits of people with MS
Beyond the obvious difficulties that such a chronic disease brings into the lives of patients – with a significant impact on its quality, self -care capacity, daily and professional activities – people living with multiple sclerosis are also hit by other weights. A study shows that “fear of an uncertain future” related to the evolution of the disease seriously affects the ability of people to function normally in everyday life.
At the origin of this fear there are a number of factors of physical, psychological, emotional and behavioral – chronic fatigue, lethargy, isolation, anxiety, depression, but also states of despair, frustration, impatience or hypersensitivity. In addition, many patients live with the fear of progressive mobility loss and a possible dependence on the support of others.
In addition to the emotional impact, there is also a significant financial pressure, felt both at the personal and family level. The costs associated with the treatment, investigations and long -term care, the lack of adequate financial support from the insurance systems, but also the uncertainty regarding the future support amplify the level of stress and anxiety of the patients.
To these are added the challenges generated by the negative attitudes of the community, the wrong ideas about the nature of the disease or the erroneous assumption that multiple sclerosis would be contagious, factors that can contribute to the social isolation of the affected.
Psychic health – an important challenge
Depression affects about 50% of people with multiple sclerosis, being three times more common compared to the general population, according to data. In addition, not only patients are vulnerable – but also supporting people, whether we are talking about careers or life partners, can develop depression at some point. This is often determined by the changes made by the disease, the pressure of domestic responsibilities, by the financial concerns and the impact of the cognitive symptoms of the person diagnosed with MS.
About half of people with multiple sclerosis facing depression experience, at the same time, symptoms of anxiety. In the context of this disease, anxiety is often fueled by the uncertainty regarding the daily evolution of health. The association of depression with anxiety can intensify suicidal thoughts, which is why these disorders should never be ignored or left untreated, attract the attention of specialists.
Loneliness, social isolation and discrimination
About three out of five people with multiple sclerosis feel alone because of the condition. According to an assessment made by the SM Society in the UK, 58% of people with MS said they feel isolated, and 60% mentioned that they frequently experience the feeling of loneliness. At the same time, 76% of the respondents said that belonging to a group helped to feel better and more sustained.
Other studies show that stigmatization associated with multiple sclerosis is commonly encountered, ranging from light to moderate forms. High stigmatization levels are correlated with decreased quality of life, greater incidence of depression and anxiety, deterioration of physical health and reduced social participation.
In order for people with MS not to remain captive between the limitations of the disease and the social barriers, more empathy, information and constant support from the whole society are needed. A life with multiple sclerosis can be difficult, but with a solid support system and an integrated approach, the quality of life of people with MS can be significantly improved.
