Most disabilities are invisible. This is especially true for many mental disorders and chronic diseases (fibromyalgia, endometriosis, myalgic encephalomyelitis…). You don’t immediately see that suffering. But the pain and impact on quality of life are real and all too often misunderstood.
Like more than 40,000 other Belgians, Lucie (34) suffers from myalgic encephalomyelitis (ME) – for ten years now. This neurological disease manifests itself in extreme fatigue and a whole host of other symptoms that vary from person to person. Just think of muscle and joint pain, cognitive problems, insomnia, problems with the heart, respiratory tract, digestive system or immune system. The consequences for daily life are sometimes incalculable.
Myalgic encephalomyelitis is characterized by what is called ‘post-exertional malaise’ or a ‘crash’. That’s actually an outsized response to the slightest effort. This can last from several hours to weeks. “A crash like that really means dying. I then have pain all over my body. At times like these I feel so nauseous and weak that I can’t get out of bed. Even talking is not possible,” Lucie explains. Unfortunately, myalgic encephalomyelitis cannot yet be cured. The treatment relieves symptoms and prevents discomfort after exercise by avoiding physical, intellectual and emotional overload. Lucie follows the pacing method. This means that she adjusts her pace to her health and therefore does not exceed her limits. “Everything I do is calculated. I only work five hours a week as a teacher. I usually sit quietly at home. And I never walk longer than five minutes without a break. Otherwise things will definitely go wrong. That is terribly frustrating, because I like to travel and move,” sighs the thirty-something.
It’s like having to ‘prove’ your disability with a cane or wheelchair.
– Lucie, Millions Missing Belgium
An invisible battle
Myalgic encephalomyelitis is an invisible disease in several respects. Symptoms vary and patients appear healthy at first glance. In addition, there are no blood tests, medical imaging or specific biological markers that quickly reveal this disease. The World Health Organization recognized this neurological condition as early as 1969, but the invisible symptoms often lead to stigmatization and misunderstanding by others. Unfortunately, this also applies to healthcare providers. “I had to struggle for three years before I got a parking card for people with disabilities. An annoyed doctor even told me that those cards are only for people who really need them. Another scornfully advised me to do something about my depression,” says Lucie. “Ignorance about invisible disabilities leads to hasty judgments. People who suffer from it are not taken seriously. This has consequences for their quality of life, their social life and their professional opportunities,” says Ouiam Messaoudi, general secretary of Essential. This non-profit organization fights for the inclusion of all people with disabilities.
“Sometimes I ask people if I can pass in a line or sit on public transport, because otherwise things will end badly for me. I then see them staring at me in disbelief because my legs seem to be working just fine. It’s like having to ‘prove’ your disability with a cane or wheelchair,” says Lucie. “Those people never see me at my worst, as a pile of misery in my bed. Only when I feel reasonably well do I go outside. But those moments are rare. Most of the time I am confined to home,” she says. “Many people think that if you have a disability you are in a wheelchair, but 80 percent of disabilities are invisible. And yet the universal symbol of disability continues to propagate that cliché. That mentality has to change. We argue for a logo that is more in line with reality,” emphasizes Ouiam Messaoudi.
Get rid of those prejudices
“Many people with an invisible disability hide their difficulties in breaking away from the stigmatizing image of a disability. Yet their problems are legitimate. And an inclusive society must take this into account,” the Esenca representative continues. Lucie is co-founder of the association ‘Millions Missing Belgium‘. The target? The recognition of millions of forgotten patients with myalgic encephalomyelitis. “We strive for support and access to empathetic and effective care,” Lucie explains. She carries a message on behalf of everyone who suffers from an invisible illness: “Never judge someone by his or her appearance. You don’t know what that person is going through. It is so difficult to have to justify your illness over and over again, when every day is a painful and grueling struggle.” Ouiam Messaoudi adds: “Many people with disabilities suffer from prejudice and disapproval. Healthcare professionals are also guilty of this. And that stereotypical look is the hardest thing to swallow.”
Do you want to know more about it? On the Esenca YouTube channel contains a webinar on invisible disabilities, with a focus on myalgic encephalomyelitis.
2023-12-12 00:06:09
#Invisible #disabilities #harsh #reality
