When I got sick, I thought the worst thing would be the physical limitations, the loss of independence and the worries about an uncertain future. Now I have learned that the very worst pain comes from something invisible, that I had no idea I had to worry about: Not being believed. Being rejected by the system that is supposed to be there to help. Feeling like a huge and worthless burden. It hurts in a way that is completely impossible to explain. I went from playing soccer every day to not being able to go to the mailbox. From being a schoolgirl on the top sports line to being a prisoner in my own home. A tick bite and a Lyme infection was all it took for me to lose the life I knew. I lost the opportunity to be myself. This is a grief that in itself is almost unbearable. The chronicler was a promising footballer. Photo: Private When I needed more than ever to be met with help and care, I encountered mistrust and rejection from the people and the system that was supposed to be there to receive me. I mourn the life I lost because of the disease, but also have to deal with the fact that I have less value than patients with the “real diseases”. To have ME is to be worth less. Every day is a fight for basic rights and I never get a break. The system was supposed to help me. Instead, I have become much sicker from an endless struggle that never ends. Traumatic experiences and delayed health care have had major consequences, including PTSD and dislocated bowels. I am scared and on guard around the clock. I depend on help for the most intimate things. I live at the mercy of others, and cannot leave home or seek medical care without an ambulance. Being at the mercy of others is a completely different form of helplessness. I am trapped in my own body and in my own home. Goals and dreams have been replaced with hope. I fight on, because I have a strong desire for a future where I can be a resource for society. I don’t choose this fight, I have to take it if I want to live. When I have won yet another battle with the State Administrator, and feel nothing but relief, then I get another decision in the mail or another painful experience. I rise again and again and continue to fight, but I am not heard. I shout, but my words have no value. Illustration: Guro Kjeilen Jakobsen Why don’t they realize that good help now can save society enormous resources in the future? I have experienced that as a patient I have almost no rights in practice, no matter how many doctor’s statements or proof I have of what is happening to me. Any victory against the system feels like a loss, because I’m left even a little more broken than I was. I am grateful for my assistants and everything they do for me. They see me and help me on my terms. I am also lucky to have met good people in the healthcare system. There are many who want to help, and who show care, but it is painful to experience that they too are trapped in a system they do not dare to challenge. The patient ombudsman in Vestland has sent a report of concern to the State Administrator about my treatment and follow-up, and asked them to open a supervisory case. The ombudsman points out that the interaction between the municipality and the specialist health service is not good enough, and perceives that the various services are disclaiming responsibility: “Everyone agrees that Jakobsen needs health care, but it is not clear what kind of help she can be offered, and no one will take responsibility for giving her proper health care”. I wish those in charge of my life could see who I really am. A young woman who finds joy in small things, who has a sense of humour, who laughs and jokes even in tough times. A young woman with good values, many resources, caring for others, with deep and close relationships. I am so much more than what the system around me sees and believes. My life is in someone else’s hands, I must not shake them. The constant battle for rights and very basic help that I and those around me are in, no one gets through unscathed. However, this is not just a story about being left alone in the dark. Because I have also learned something else, something even more important. In this chaos there is something that has been constant and immovable; my family and the unconditional love they have shown me. My loved ones have kept me up. When I myself have begun to doubt my own experience of reality, they have ensured that the system has not been allowed to define who I am. They see the whole of me, exactly as I am and always have been. My story is proof that love and relationships can make it possible to endure anything. Without their support, I would not be here today. Together with brothers Viljar, Rune, Anders and little sister Mari. Illustrated by the chronicler. Illustration: Guro Kjeilen Jakobsen There are probably more people around our country who will recognize the feeling of not being taken seriously. Therefore, I want to end with an important call: It is absolutely essential to be seen, believed and taken seriously when life falls apart. Everyone needs to be met with humanity and ears that listen. You must never underestimate the power of showing that you care. For me, family has been my salvation, but not everyone is as lucky as me. The system that was supposed to help me took away my voice. Now I’m trying to take it back, before there’s nothing left of me. See the chronicler and his brother Anders in the documentary film “Ikke slipp me” on news: They are young and they are relatives. Anders, Thyra and Nora have to deal with illness in their loved ones. Send us your opinion Want to write? Feel free to contact us at news Ytring with your post. The guidelines can be found here. Published 27.10.2024, at 16.19
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