Hohenpolding - Renate Seelhof is 62 years old and has been suffering from fibromyalgia for over 20 years. It was a long road before she was diagnosed with fibromyalgia. Even today she is sometimes not taken seriously and dismissed as a hypochondriac, which is why she is now fighting publicly for recognition of the disease.
Hohenpolding - With a youthful smile, 62-year-old Renate Seelhof opens the door to her single-family home in Starzell, which she lives with her husband Valentino Caldiero. At first glance, the woman from Hohenpolding looks like blooming life. She has applied delicate make-up, her clothes are color-coordinated, and her pedicured feet are in light fur flip-flops. But when she turns around and leads the way, her stiff gait is immediately noticeable. Relieved, she falls onto the couch after a few meters. “I can’t stand for long,” she explains, “I sit down everywhere, on every stone, on every hill.”
The discrepancy between her appearance and her actual state of being is Seelhof's dilemma. “You can’t tell from looking at me that I’m sick. Many people don't understand when I withdraw because I need peace and quiet." She has had to fight again and again for years to have her illness recognized.
She had a “wonderful weekend”. All three adult children were visiting their parents in Starzell. It was turbulent compared to her everyday life as a couple with her husband, but now Seelhof has to recover from it because it was “massively stressful” for her.
The 62-year-old suffers from fibromyalgia; the disease was diagnosed 18 years ago at the Großhadern Clinic. Before that, she had been going from doctor to doctor for five years, and no one had an explanation for her fatigue and pain all over her body. She herself had the feeling that “something is wrong, but no one can help”. No doctor had found anything and she was sometimes labeled a hypochondriac.
So she attributed her exhaustion in the first few years to her restless life and her perfectionism: mother of three children, working full time, house and garden always had to be in top condition. After an operation on her ankle, an orthopedist at the Schoen Clinic gave her the groundbreaking tip that she should get tested for fibromyalgia. That was the first time she had heard of this condition.
Fight for recognition
Fibromyalgia is described on the homepage of the Bavarian Fibromyalgia Association, of which Seelhof is also a member, as a serious chronic disease without any inflammatory values, which is associated with severe pain in the muscles and tendon attachments. Fibromyalgia is also known as whole-body pain. Side effects of the disease can include morning stiffness in the joints, fatigue, depression, sleep disorders, migraines, irritable bladder, irritable bowel syndrome, difficulty concentrating, difficulty finding words, chronic exhaustion and many more. Fibromyalgia is a disease of exclusion, which means that all other diseases must be ruled out before a diagnosis is made. A frequency of one to two percent in the population is assumed. Women are affected at least 6 to 7 times more often than men.
This diagnosis was good for Seelhof. “I finally knew I wasn’t imagining it all. I didn't know what to do anymore." In addition, with the certificate in hand, she was now able to redefine herself. She applied for severely disabled status, reduced her working hours and changed her area of responsibility. “That was very difficult for me. I worked in the secretariat at the support center in Riem for 14 years. I loved my work.” But because of her illness, she has to rely on flexible working hours. “If I don't feel well in the morning, I may not be able to put on my socks and shoes on my own because my body is so stiff.” Then she needs time and can't be at work at 7:30 a.m. on time. She stayed with her employer but moved into administration. “I can start at 10 a.m. and work from home one day a week.”
Sometimes even clothes hurt
Due to her illness, the 62-year-old has lost a lot of her quality of life, “which often makes me very sad.” The suffering isolates the patient; she hardly feels like going out with friends, going to a concert, going on vacation or pursuing hobbies. “I'm happy if I can get through the day to some extent. The illness often makes me depressed,” says Seelhof, describing her state of mind. She admits that she is also afraid of the future.
Although a lot has happened in relation to fibromyalgia in the last ten years, it still happens that a new doctor dismisses the disease as a “fashion made-up disease”. That's why going public is so important to her. By raising awareness of fibromyalgia, she wants to help fellow sufferers to recognize and accept the disease, to network and to make those around them aware of it. Even within the family, it wasn't easy for Seelhof to differentiate himself. “Of course, it’s hard for my husband to understand why I can’t take tight hugs anymore,” she admits, explaining, “Sometimes even the clothes on my body hurt.”
Despite everything, the diagnosis has taught her to deal with her illness, to take breaks and to regularly spend three weeks in the pain clinic: “That helps me.” As the next step, she wants to take a look at her diet, which she also hopes to achieve Relief. If time allows, she would like to get even more involved in the Bavarian Fibromyalgia Association because she is certain: “Only when we are heard will the disease that cannot be seen be given the necessary respect.”
More information
Those affected and their relatives can find out more about fibromyalgia at www.fibromyalgie-bayern.de. Self-help groups across Bavaria are also listed there.
Fight for recognition