Multiple Sclerosis (MS) not only disrupts the patient in several psycho-emotional aspects, but also affects his/her family environment, both at a functional level and in the area of interpersonal relationships between the patient and his/her family members. The family of a person with MS is affected by various negative emotions, both because the pain experienced by their loved one causes hurt feelings and because they are faced with an unfamiliar situation which requires careful management. The mental state of the person with MS is already burdened enough, so a management or approach that falls short may exacerbate the already adverse conditions experienced by the patient.
Psychological Outcomes of People with MS
The person with MS goes through different emotional phases. Initially, he is apathetic and denies the condition is happening to him. He cannot accept the reality of the diagnosis, and there are occasions when he has a tendency to run away. When the symptoms persist, denial turns into fear and anxiety, as the patient is still uninformed about the inflammatory disease he is dealing with and persistently asks for information from the medical staff.
The next stage is the feeling of anger, which is sometimes directed towards oneself, and sometimes – quite often – towards doctors and family, holding them responsible for the patient’s health condition. The key here to managing this anger properly is understanding and empathy.
The family’s attempt to get back at the patient that they are not to blame for their health condition can increase feelings of anger and anxiety. In contrast, support and understanding can act as a soothing influence.
The next emotional stage is depression, in which the person with MS experiences feelings of resignation. Feeling that he has lost his strength, he gives up personal and future plans he had set before the onset of the disease, and is overcome by a strong fear of being abandoned by his loved ones, such as his children and partner. In cases where the family environment is not supportive and the patient has not accepted the reality of his health, he takes on the role of a helpless person who is attached to his carer and ceases to seek motivation, thus reducing his sense of purpose in life.
At the opposite extreme, children who have a parent with MS often present as caregivers, with a heavy burden of responsibility for their age, and several marital relationships appear to end in divorce.
Effective Family Management of MS
By understanding the emotional stages that a person with MS will go through, family members are able to manage the condition more effectively, empowering the sufferer to accept the inflammatory disease and create strategies to return them to functionality.
Some practical tips are:
– On the one hand the family should be supportive, on the other hand human mistakes will be made in the provision of care, so there should be an honest discussion that creates a healthy relationship.
– There are several symptoms which are more rare, not so visible, or quite difficult to explain by the patient and there have been several cases which should be avoided where these individuals have been accused by the family that “the symptom is just in their mind”, they are fabricated and false.
– The person with MS is, above all, a human being and there are several times when he/she does not want to discuss the disease he/she is facing. The disease is an aspect of his life that does not define him completely.
– A list of activities that he was active in before he had MS can boost his confidence and gradually bring him back.
– Exercise and extracurricular activities in general seem to have beneficial properties for the health of the person with MS and increase their quality of life.
– The person with MS should be actively involved in decision making at home so that he or she feels that he or she is playing an active role by taking on responsibilities.
– Children with MS need a careful approach. Proper information will restore fear with feelings of security.
– The disease does not progress in the same way in everyone, so there needs to be close communication with the doctor.
– Several psycho-educational programs combined with follow-up with a qualified counseling psychologist, equip family members and the sufferer with effective coping strategies and management of the disease.
National Multiple Scelerosis Society (n.d.). Family Matters. Retrieved 11 April 2021 from https://www.nationalmssociety.org/Living-Well-With-MS/Relationships/Family-Matters
Prakash, R. S., Schirda, B., Valentine, T. R., Crotty, M. & Nicholas, J. A. (2019). Emotion dysregulation in multiple sclerosis: Impact on symptoms of depression and anxiety. Multiple Sclerosis and Related Disorders, 36. https://doi.org/10.1016/j.msard.2019.101399
Uccelli, M. M. (2014). The impact of multiple sclerosis on family membersQ a review of the literature. Neurodegenerative Disease Management, 4(2). https://doi.org/10.2217/nmt.14.6
White, J. L. & Dressendorfer, R. H. (2004). Exercise and Multiple Sclerosis. Sport Medicine, 34. https://doi.org/10.2165/00007256-200434150-00005
Κουτσουράκη, Ε. Σ. (n.d.). Η συμβίωση με τη σκλήρυνση κατά πλάκας: Οι επιπτώσεις στην οικογένεια. Ιατρικά Θέματα, 54. Ανακτήθηκε 11 Απριλίου 2021 από http://www.isth.gr/images/uploads/01-2-KOYTSOURAKH.pdf