The most common diagnosis of “multiple sclerosis” is between the ages of 20 and 40. This is the time when he enters adult life, he starts a family. Everyday life changes not only of the sick person, but also of their relatives.
Young people with MS who have not yet started a family are often afraid of entering into relationships at all. The reason is obvious: on the one hand, they do not believe that a healthy person will not leave them at some point when a disability occurs, and on the other hand, they do not want to “give” their loved one the suffering resulting from living with an incurably ill partner. Both attitudes result from a lack of self-acceptance, lowered self-esteem. After all, there is no certainty as to how the disease will develop, what the fate of the relationship will be, or that a potential partner will actually be happier with someone unaffected by a chronic disease. In fact, any relationship, including two healthy people, carries a risk of potential failure. Sometimes healthy people should be given a chance to show their love. The flight of a sick or disabled person from a relationship is a kind of discrimination against healthy people.
Family disease
The situation is different when the diagnosis is made after the family is created. Then the disease affects, in a sense, both partners. The 2003 resolution of the European Parliament on the prohibition of discrimination against people with MS treats multiple sclerosis as a disease with social consequences. In fact, not only one person is “sick”, but the whole family, the environment The whole family needs support, learning to live with an incurable disease. It’s good if they are able to talk about their needs and problems. It is worse when, for some reason, one of the parties has trouble communicating its needs. The best solution is then to use professional psychotherapy. Information on the location of the nearest facility offering this type of service can be obtained by using the SM Information Center 0 801 313 303, the call is paid as per call at the premises, or by using the Polish SM map available on the website www.ptsr.org. pl
As disability progresses, it is very common to change roles in a relationship. This is difficult, especially in relationships with traditional segregation of duties. It is hard for a man who has been supporting his family to come to terms with the pension and staying at home, being dependent on his wife. Women, on the other hand, find it difficult to accept the fact that they cannot take care of their home and their loved ones as before. It is much easier to change roles in a more partnership relationship, which has already been flexible about the division of household chores.
Partner – guardian
As time passes and the disability progresses, the partner becomes more and more a carer. He also takes care of the sick person. It is important that, among these duties, the partner does not forget about himself, otherwise his life may burn out. In this case, taking care of yourself is also caring for the sick person. The sick caregiver is not able to take care of the loved ones. Therefore, it would be good to build a group of people around you who, if necessary, can help, take care of the sick, when the partner must, for example, go to the hospital or deal with other important matters. This group should be large, composed not only of family members, but also of neighbors, friends and acquaintances. The point is that individual helpers should not feel overburdened.
Many carers say help is hard to come by. Of course, creating a support network around you is not particularly simple, there are many things to learn: from asking for help to being able to accept refusal. The latter is not always the result of reluctance. Sometimes it’s just plain lack of time or tiredness. When addressing someone, it is also worth remembering what will be easier for the person. A neighbor who works near a pharmacy can buy prescriptions or collect medicines, his teenagers will be happy to take their dog for a walk … Requests should be clear, simple. Usually people from the outside are willing to help, but they do not know what they could be of help with and sometimes they are afraid to ask.
children
Children are an important link in the family. Multiple sclerosis is not a disease that forces you to give up parenting. There are no medical contraindications for this. It is not hereditary. Admittedly, if the parent is a person with MS, the likelihood of a child getting the disease increases by only 3 to 5 percent. Rather, we can talk about a genetic predisposition. However, in order for the disease to occur, a number of other factors, e.g. environmental, must also appear.
Pregnancy by itself does not usually aggravate the disease progression. During pregnancy, the immune system works a bit differently, it lowers its hyperactivity to prevent rejection of the fetus. Malaise during pregnancy is usually associated with a change in body weight, fatigue. Problems can arise during the postpartum hormone storm, which in itself is an effort for the body. This is when the help of loved ones comes in handy, as they will take over some of the responsibilities of a young mother and take care of both her and her baby.
Difficult parenting
Many parents fear that the moment they lose their physical fitness and cannot fulfill their role in the same way, their children will suffer. In fact, for a child, more important than playing football or skiing together is the closeness and the sense of security that a parent gives. A dad in a wheelchair is not worse than running on the pitch, indeed – he can be better if he devotes more attention and care to his son. If a parent has difficulties in providing the child with information about the disease in an age-appropriate manner, they can use the children’s books available in the PTSR.
Most of both children and adolescents have a tendency to assume the responsibilities of an adult when a parent is ill. On the one hand, it is good if the child helps at home, then learns responsibility, and empathy, on the other – you cannot let SM take away his childhood. The tasks undertaken by the child should be “tailored”. Moreover, both the child and the teenager must have time for themselves, for their growing up, and for contact with their peers. It is necessary for proper emotional and social development. Only then will the house retain its size, it will have SM, not SM – his.
Text: Iza Czarnecka