Am 11. and 12. May are the International Awarness Days for ME/CFS. You should pay attention to an illness, which mostly remains invisible and lead a daily fight against the hundreds of thousands of people in Germany. We talked to a person concerned about how to live on with ME/CFS and not only on our own, but the limits of this society reaches.
What is ME/CFS for an illness?
ME/CFS (Myalgic encephalomyelitis / Chronic Fatigue syndrome) Is a severe chronic neuroimmunological disease. It leads to profound exhaustion, which does not get better through sleep or calm, and too many other symptoms: Pains, Circuit problems, Sensitivity to irritation and cognitive restrictions (reduced memory, Recording- and ability to concentrate). The HAUATHERHERSER is mostly a viral infection like Pfeiffersche's glandular fever, Influence of Body Confidence. Are affected in Germany (Stand 2023) 620.000 People. The number of unreported cases is likely to be significantly higher due to the lack of diagnoses.
What does it mean to be affected by the disease for people?
It doesn't just mean being tired. The exhaustion is so profound in ME/CFS, that it is not comparable to "normal fatigue" or exhaustion during and after an infection. The symptoms and their severity in ME/CFS vary greatly from person to person. Even in the event of a mild course, the activity level is reduced to around 50% - that means, that those affected may still be able to work part -time, However, have to rest in the rest of the time and often feel bad. Moderately ill can rarely leave the house - often only with a wheelchair or rollator. Heavily sufferers are permanently bedridden and hardly able to, To endure stimuli such as light or noise. ME/CFS affects all areas of life and can lead to a high degree of disabilities - right up to complete need for care. In this respect, the term "fatigue syndrome" is also misleading-it does not do justice to the severity of the disease.
How does you affect you ME/CFS personally?
ME/CFS affects me in all areas of life. I can no longer lead my previous life. Again and again I'm tied to bed for days - with pain, strong sensitivity to stimulus compared to light, Noises and touch. Then nothing stays with me, except to be in the dark and hope to be in the dark and hope, that it will get better at some point.
There are also days, I feel a little better on. But because I am young and my illness is not always visible, I encounter a lot of lack of understanding. I often have the feeling, that I am not believed - that others cannot understand, how sick I really am, Because I look "normal" on some days. Nobody gets the worst moments of my illness, because then I'm too weak, To ask for help at all. This invisibility makes it so difficult, Get attention to the disease.
What influence the situation had on your relationships? What experience do you do with ME/CFS in your environment?
My friendships have changed a lot. I have always become more dependent - at the same time it is extremely difficult for me, to ask for help. I'm still deep in this logic: “You should just take, If you can also give. " The idea, that others are just there for me, feels almost unbearable for me. And I think, Not only I think so - also parts of my environment.
I am significantly less powerful today than before - and in a society, which is strongly shaped by performance thinking, Is that incredibly hard. It feels humiliating, and this feeling, "Don't be enough", accompanies me permanently. who does not (more) is fully efficient, is often not only left alone, but literally devalued. I have to justify myself - to doctors, authorities, In a personal environment. I am always assumed, I exaggerate, Imagine something to me or just be mentally unstable. This attitude reminds me a lot of the old one, Patriarchal picture of the "hysterical woman" - a picture, that continues to this day, Especially with diseases, which mainly affect women. According to studies, three quarters of those affected by ME/CFS are women (where the genders have only been grasped binary in the studies)
What hurdles do you come across in the health system?
I come up with so many places in hurdles - for doctors, authorities, Care facilities. I've been looking for treatment options for years, But I have to find everything out myself. For an illness, which also massively restricts thinking and planning, Is that insanely stressful. And I am still moderate - I don't want to imagine, How the seriously ill person is doing. They become practically completely invisible.
How is the supply situation for people currently, that are affected by ME/CFS?
Medical care is fragmented. There is hardly any cooperation between the disciplines. I've been waiting for my rehab for over two years - first she was rejected several times, Then I waited for a year for a place. My application for a driving service for the way of work was rejected, Because I'm "too sick to work". I am supposedly too healthy for a classification as a severely disabled person. These contradictions only make sense, If you assume, that authorities want to pay as little as possible. Responsibilities are pushed back and forth - as if we wanted to "employ" us, Instead of helping.
And then there is the social imbalance: I am very afraid of it, to be completely unable to work at some point - because then I have a lot of treatments, Medicines or help could simply no longer afford. Often a umpteen treatments are recommended, But everyone is self -paying benefits. Who has no money, Has no chance. As long as you still work as a workforce, maybe moves something else. But as soon as you are "too much" sick, you are written off or broken economically.
You have addressed the social imbalance, The stigmatization of women with ME/CFS – The social handling of the disease concerns core topics of the left. How do you experience dealing with me/CFS there?
Also in left contexts, where you actually want to live other standards, It is often not fundamentally different in the question of performance logic than in the rest of the company. Performance is not always defined by wage work there, But the value of a person often measures his participation here too: an Demos, the Plena, At the organization of events. Recognition depends too often on activism, And who cannot participate or only to a limited extent, To be left out quickly. Care work is also unevenly distributed in these rooms, And awareness of it, How much responsibility remains in family or partnership -based relationships, Missing often. There is a lack of a collective understanding of this, that care work in our fights is not just considered, but must be organized in a structurally different way - even beyond classic employment relationships.
People with care- or support needs in this society, which is so much geared towards self -optimization and productivity, systematically disadvantaged. Instead of solidarity, they learn distrust and the feeling of being a burden. The social structure forces them to do so, to explain and defend their need - over and over again.
What makes you angry?
I am angry, Because I'm not taken seriously. I often don't find an expression for this anger - and if it does, Then she meets the wrong. I feel left alone. And I'm angry with this patriarchal, capitalist system, that always gives me the feeling, I am a “little one, Wailing woman ", which should just pull together. If you don't work, is nothing worth it in this society. I feel that every day.
I urgently need better medical care, Suitable medication, The recognition of ME/CFS as a chronic illness and disability. But I also need a social rethink: With regard to care work, On solidarity, On mutual responsibility. We need a system, in which not "the*the strongest wins", but in which we take care of each other.
What do you wish? What do you need?
I wish, that people really listen. That they don't judge prematurely, but try to understand. I wish for recognition, support, Participation - and a society, the weakness does not see as a flaw, but as part of being human.
I need medical help for everyone, without having to fight. I need financial security for everyone, Without fear of complete crash. I need rooms, in which I can show myself, as I am - sick, vulnerable, angry, exhausted. And I need people, who stay, Even if I can't "afford" anything.
