Read part 1 here.
The support in Monika's environment is tangible, the people around her are interested and patient. Nevertheless, Monika is sometimes unsure whether she is understood and whether people really believe her illness. When she has strength, she is active and outside. The tired and weak moments happen at home and are not visible. Her partner Jahn, her greatest support, plays a key role in her recovery. She would like to thank him from the bottom of her heart.
Nevertheless, Monika hopes on some days that nobody asks her how she is doing. She doesn't always have the strength or desire to talk about her condition. Sometimes she simply says: "Yes, I'm doing pretty well today."
Monika's credo: Leave feathers, grow feathers! (Source: LAROUXLA photoblog)
Monika sometimes worries that she will not make a full recovery. In general, she fears that sufferers will be forgotten, as Long COVID and fatigue in particular have hardly been measurable so far. A new Zurich study that may have found biomarkers in the blood to diagnose Long COVID gives her hope. She hopes that research into ME/CFS will also receive more funding and attention from politicians. A measurable diagnosis could also help to obtain IV benefits.
Only those who have experienced Long COVID or fatigue themselves know how I feel.
Financial worries and a complaint against disability insurance (IV)
Monika's professional and financial situation is proving to be an additional hurdle. In the limbo between illness and health, she struggles to find her own way. Unemployed and looking for a new part-time job in the social sector, Monika encountered resistance from the IV. At the moment, Monika urgently needs occupational reintegration measures in the form of remedial training. However, her application for benefits was rejected. She was assessed as fully recovered by the Regional Medical Service (RAD).
After Monika received her first negative preliminary decision from the IV, she had 30 days to write an objection. She then received a negative decision with the same deadline. Monika was advised to seek help from a lawyer. She contacted a lawyer specializing in social insurance law. Fortunately, she had legal expenses insurance as part of her supplementary health insurance.
The lawyer drafted the first objection on her behalf and ultimately a complaint. It is to be expected that this process will be conducted entirely by letter and that Monika will not have to appear in court. However, it is possible that an assessment (Gutachten) will be conducted with her in person. She has no idea how long it will take for a decision to be made. However, she strongly recommends that others in her situation claim their legal expenses insurance and find a specialist lawyer, as she believes that without a lawyer, those affected have no chance of challenging the IV's decisions and thus obtaining their rights.
Source: LAROUXLA photoblog
Moments of joy
Despite the challenges, there are moments of joy - little things that make Monika happy. Like the feeling of strength on a day cooking for guests, or simply spending a Sunday morning on Bern's local mountain Gurten covered in snow.
Since the illness, I experience much stronger feelings of gratitude.
Her road to recovery was individual and hard. Self-care, allowing anger and grief, and therapeutic help were key components. She doesn't want to give general advice to other sufferers, as the disease is so individual. Instead, she describes what helped her: accepting the situation, a lot of self-care and also appreciating the small steps. Setting priorities, getting rid of old burdens, and seeking support - these are her lessons on the road to recovery. "If possible, get psychotherapeutic help, talk about your state of mind and have your recovery documented by doctors," she adds.
In the future, Monika plans to use her experience to help other people affected by Long COVID. She could imagine this in the form of a self-help group or counseling, as she is already increasingly being asked for advice on her website. A photo exhibition this year will symbolize her personal journey and the fight against forgetting those with the disease. Starting with her Long COVID diary (LoCo Diary), her LoCo cosmos is to be made accessible to the public in a photography exhibition. She is currently in the process of finding a suitable venue and raising funds. The exhibition will be dedicated to all people affected by Long COVID.
We thank Monika for the interview, wish her all the best for the future and are looking forward to her exhibition.
Editors note:
Since our interview, Monika has won in her complaint against the IV and will receive occupational reintegration measures.
