–
Patricia is 26 years old, engaged and about to take the 2nd state examination in law. She enjoys hiking, volunteering and has MS. Multiple sclerosis, grade 18. She was diagnosed when she was a schoolgirl. Her hand was tingling for no apparent reason at the time, like ants under the skin. At first she ignored it. The doctor couldn’t find anything. Finally, bright spots appeared in an MRI image.
The illness was an issue in the relationship from the start
Patricia met her fiancé Sebastian, also 26 years old, in the student residence. Right from the start of your studies. “Of course, the illness was an issue from the start,” remembers Sebastian. The two are sitting next to each other on the sofa in their living room. “Of course I’m afraid as a partner. At the beginning of the relationship I asked myself, do I want that, am I ready to take it, do I trust myself? I’ve always answered these questions in the affirmative for myself. Yes, I want to go with you Patricia to be together.” The two live right next to the Seepark, their apartment is flooded with light, lettuce, tomatoes and strawberries grow on the balcony. There’s even a small apple tree out there. The flowering period has just ended and the fruits are beginning to form.
Patricia has fond memories of the early days of their relationship.
“At the beginning of the relationship I asked myself, do I want this, am I ready to take it, do I trust myself to do it? I have always answered these questions in the affirmative for myself.” Sebastian
“It quickly became clear to me that Sebastian was something serious. We sat together in the student residence for hours at the time. We laughed a lot. And we also had serious conversations. I then explained to him step by step everything he needed to know about my illness . Just when you can imagine something serious, the illness affects your partner’s life too much not to talk about it.” She looks at Sebastian. He smiles, almost a little embarrassed. Sebastian is also about to complete his studies. Story. After that, the two of them will go on vacation to Denmark. Getting married next year.
Multiple sclerosis as a “disease with a thousand faces”
Multiple sclerosis is an inflammatory disease of the central nervous system that affects the brain and spinal cord and usually begins in early adulthood. Multiple sclerosis is not contagious, it is not necessarily fatal, it is not muscle atrophy and it is not a mental illness. Common prejudices, such as that MS always leads to a life in a wheelchair, are also not correct. The disease still leaves many questions unanswered and varies so much from patient to patient in terms of course, symptoms and the success of therapy that general statements can only be made to a limited extent. For this reason, MS is also known as the disease with a thousand faces.
The disease comes in waves
Patricia would like to describe how she experiences the disease. “My biggest problems are the weakness and tingling in my right hand, balance problems at times, and vision. The disease comes in flares. There are also long phases where I don’t notice anything or little of it. During one of these flare-ups, an optic nerve became inflamed , since then I sometimes have trouble seeing out of my left eye. Also, a nerve in my lower leg is affected, which is why the heel doesn’t lift enough. It doesn’t bother me much, but I notice it when I run.”
Sebastian appreciates the time at Patricia’s side. He’s learned a lot over the years. “Patricia’s illness has given me a different perspective on life. It’s good for me to see the world through Patricia’s eyes. As a relative, you learn a healthy amount of humility, you learn about life and Appreciating the little things. It inspires me how brave Patricia is. I admire how she is there for others who are affected.”
The AMSEL is a self-help group for those affected
Patricia is an honorary spokeswoman for the young AMSEL, a contact group for young people with MS between the ages of 18 and 40. “The group is there to give you the opportunity to talk to other people who are affected. In a safe atmosphere, where you don’t have to explain everything first. In the group you get solutions to problems that others have already found. You don’t have to do everything alone, we are there for you. We will help you,” explains Patricia. She addresses her words directly to each and every person affected. “If you’ve just been diagnosed, don’t stick your head in the sand. You’ll still be able to do anything. Anything goes, it just works differently.”
The association AMSEL eV
AMSEL stands for Action for Multiple Sclerosis Patients. The action group has set itself the goal of improving the living conditions of the sick and their relatives in the long term. Its tasks are the independent and comprehensive information and education of people with MS and their relatives, the greatest possible integration of people with MS into family, work and society, the improvement of the coexistence of healthy and sick people, educating the public about the disease and the promotion of Research on the development and treatment of MS.
Contact: [email protected]
–
Patricia came across the AMSEL right after her diagnosis. At that time there was only one contact group, in which all age groups were combined. Together with another sufferer, Patricia decided to open a group only for young sufferers.
“We felt the need to talk about young people’s topics. Topics like family, friendship and relationships. But above all professional fears. These are topics that older people can deal with differently because of their life experience. They have already left certain fears behind .
“MS used to be an illness that you had to endure. Today there are so many opportunities to become active yourself.” Patricia
There are differences between the generations in dealing with the disease. MS used to be a disease that had to be endured. Today there are so many ways to become active yourself, there are a variety of therapeutic approaches and medical research is making constant progress.”
Exchange about fears, doubts and everyday problems
In the young AMSEL, around eight to ten affected people from Freiburg and the surrounding area meet at regular intervals. Most meetings take place in relaxed cafes or quiet parks. The atmosphere is relaxed, you are among yourself and are allowed to show weakness. There is a WhatsApp group where people communicate, chat and discuss on a daily basis. You always get appointments for specialist lectures and advisory services. Due to her role as spokeswoman for the young AMSEL, Patricia knows the fears, doubts and everyday problems of a large number of those affected.
“As an affected person, it’s very good for me to talk to people who have had very similar experiences to mine,” says Patricia. “Most of those affected that I know are afraid of occupational restrictions. These are existential fears. In the minds of most employers there are still these old prejudices, someone has MS, they end up in a wheelchair at some point, they will later don’t have a family, as an employer I prefer to keep my hands off it. But some of those affected don’t like to talk about the disease, even among their close friends and acquaintances. They don’t want to be stamped. The worst thing is empty phrases like, uh, that does But I’m sorry, I didn’t think that you of all people would be affected. If you’re close to someone affected, you should be able to be silent and listen.”
Despite the illness, a happy life is possible
Above all, Patricia would like to reach acquaintances, friends and colleagues of those affected with her advice. All those who are confronted with the topic without suffering the effects themselves.
“In the best case, you simply offer help, ask where I can specifically support you. A very important aspect in social interaction with those affected is also the insight that there are people who, despite their illness, manage to be quite happy or who at least try. And ultimately, close relatives have to accept that there are also courses of disease that you can’t do anything about, that cannot be cured. But it’s really not easy to always find the happy medium. On the one hand, to offer help, on to take the illness into account and, on the other hand, not to constantly put the illness in the foreground. After all, it is also the best thing for those affected to be able to be themselves without any worries.”
More awareness of life
When asked if the disease brings anything good, Patricia does not immediately know an answer. She starts to talk a few times, then stops again. Her eyes wander to the balcony, then she looks at Sebastian.
“I’ll put it this way, you develop certain strengths. I’m forced to think about what’s good for myself. Who do I trust? Which people make me strong?” She replies in a firm voice. Her hand seeks Sebastian’s. “I think you learn a lot about life through an experience like my illness. You live every day of your life very consciously. You make particularly deep and loyal friendships. Because of my illness, I know who I’m dealing with And I think that’s worth something, that’s something I can be proud of and that’s something I can be grateful for.”
your eyes are smiling.
–
