2023-12-12 02:06:09
Invisible Disabilities: The Battle for Recognition and Understanding
Many disabilities are invisible, especially those related to mental disorders and chronic diseases such as fibromyalgia, endometriosis, and myalgic encephalomyelitis. The suffering is not immediately visible, but the impact on quality of life is real and often misunderstood.
In Belgium, more than 40,000 people, including 34-year-old Lucie, suffer from myalgic encephalomyelitis (ME), a neurological disease characterized by extreme fatigue and a range of other symptoms. These symptoms vary from person to person and can include muscle and joint pain, cognitive problems, insomnia, and issues with the heart, respiratory tract, digestive system, and immune system.
One of the defining aspects of ME is ‘post-exertional malaise’ or a ‘crash’, which is an exaggerated response to even the slightest effort. Lucie describes these crashes as excruciating, leaving her in pain all over her body, unable to get out of bed or even speak. Unfortunately, there is no cure for ME, and the treatment focuses on relieving symptoms and preventing discomfort after exercise by avoiding physical, intellectual, and emotional overload.
ME is an invisible disease in multiple ways. Symptoms vary, patients appear healthy at first glance, and there are no quick diagnostic tests. The lack of visible signs often leads to stigmatization and misunderstanding by others, even among healthcare providers.
Lucie recounts her struggle to obtain a parking card for people with disabilities and facing dismissive attitudes from doctors. Ouiam Messaoudi, the general secretary of Esenca, a non-profit organization advocating for the inclusion of people with disabilities, emphasizes the impact of these attitudes on the quality of life, social life, and professional opportunities of those with invisible disabilities.
For many people with invisible disabilities, there is a constant need to justify their illness and prove the legitimacy of their struggles. Ouiam Messaoudi emphasizes the need for a change in the societal mentality and for a more inclusive symbol of disability.
Lucie, along with others suffering from invisible illnesses, is working towards the recognition and support of millions of forgotten patients with ME through the association ‘Millions Missing Belgique’. Their goal is to advocate for empathetic and effective care and to challenge the prejudice and disapproval faced by those with invisible disabilities.
The message from both Lucie and Ouiam Messaoudi is clear: never judge someone based on appearance, as you don’t know the battles they are fighting. It is time for society to rid itself of prejudices and show empathy and understanding towards the challenges faced by those with invisible disabilities. If you want to learn more about invisible disabilities, Esenca’s YouTube channel features a webinar on the topic, with a specific focus on myalgic encephalomyelitis.]
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