INTERVIEW: Invisible disabilities – Just because you do not see it, does not mean that it is not there

Salonaz Sami, Friday 18 Feb 2022

Ahram Online spoke to neurologist and mental health specialist Ayman Youssif, the first person in Egypt and the Middle East to obtain a PhD in invisible disabilities from New York University.

Ayman Youssif

Invisible disabilities, also known as hidden or non-visible disabilities, are disabilities that are not immediately obvious to the eye. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living. They can be physical, mental or neurological.

Amazingly enough, Youssif who specialises in fibromyalgia, myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) and the invisible central nervous syndrome (ICNS), among other conditions, is also an ME and fibromyalgia patient himself.

But instead of giving up and accepting life as it was, he chose to overcome his disease and make a challenge out of it.

Fibromyalgia is a condition that causes pain all over the body, sleep problems, fatigue and frequently emotional and mental distress among other symptoms.

"People with fibromyalgia may be more sensitive to pain than people without it," he said. This is known as abnormal pain perception processing.

Meanwhile, although fibromyalgia does not go away in a substantial number of people, the odds of it getting better is always there.

"It all depends on how long a person has had it, as well as their genetic factor," Youssif explained.

"Its main symptoms, widespread pain, fatigue and sleep disorders, are similar to other conditions, and there is no test or scan that can diagnose fibromyalgia directly, so it can be hard for a physician to nail it down," Youssif said.

ME/CFS is a serious, long term illness that affects many body systems.

Patients are often not able to do their usual daily activities and may, at times, be confined to bed by the severity of the symptoms. Like fibromyalgia, ME/CFS patients also have severe fatigue and sleep problems.

Youssif, who is also a poet and a writer, is currently working on his master's thesis in political science, proving to everyone that people of determination have abilities and something different to add to society.

Moreover, Youssif was recently invited to take part in the fourth edition of World's Youth Forum, held under the auspices of President Abdel-Fattah El-Sisi. The annual global event was held earlier this year in Sharm El-Sheikh under the slogan “Back together.”

The forum is an interactive platform established by a group of promising youth to convey a message of peace, prosperity and harmony to the world.

It engages distinguished youth from around the world in an enriching set up, allowing them to share their opinions and come up with recommendations and initiatives in the presence of world leaders, prominent decision makers, intellectuals and influential figures.

"The invitation for the forum was not just for me, but rather for all fibromyalgia and other invisible diseases patients," said Youssif. "It was a chance for us to be heard and acknowledged after years of marginalisation, rejection and bullying because we are just different," he added.

"My participation was not just as the first Arab in the Middle East specialised in those invisible diseases, but most importantly as a patient of a couple of them. And the responses I got from all participants have exceeded my imagination," he explained.

"Egypt, now, has a chance to be one of the first countries in the world to recognise people with invisible disabilities, their rights and their ability to participate and achieve, as the new republic adopts a qualitative concept of human rights based on the inclusion of all," Youssif said.

During the forum, Youssif called for the launch of the first initiative in the Middle East to define invisible disabilities, amend legal and legislative systems to include them and work on adopting modern treatment protocols for their conditions.

"We will see limitless energies from those patients because all of them have creative abilities in all scientific, literary and artistic fields," Youssif said. 

Invisible disabilities have a worldwide presence, affecting nearly one in 20 people globally.

However, in Egypt, the numbers are not accurate, "because most of those patients do not get the proper diagnosis or the right treatment right away," explained Youssif. 

"The more we all understand about invisible disabilities, the more we can help to improve the lives of people experiencing them. And continuing medical education about them is needed to improve the quality of health care," he added.

Youssif's study showed that most of those syndromes are usually triggered by stressful events, social or personal conditions including family trauma among other things.

Once diagnosed, "a lot of patients suffer from bullying, familial or social rejection, which increases the severity of the symptoms and in some cases leads to them losing their jobs or loved ones," he said.

"But just because a person has a disability, does not mean that they are disabled," he added.

The bottom line is that everyone with a disability is different, with varying abilities and needs. Therefore, we all should learn to listen with our ears instead of judging with our eyes.

Meanwhile, Youssif's study has also provided, for the first time in the Middle East, a medical, social and functional model for those invisible illnesses. "Any disability has to have those three scientific models. Those models provide a framework for how people perceive those of us who are different. They also provide contrasting ways of thinking about disability," Youssif explained.

Understanding those models is important not just for people directly involved with a child or adult with a disability, but also for everyone in society in order to build positive attitudes and a better understanding.

"We need to provide awareness, education, connection and support for everyone who lives with a debilitating condition. Because invisible conditions can be just as disabling as visible conditions, even more so," said Youssif. However, "they do not get the empathy or credibility that visible conditions get," he added.

Aspects of the daily life and behaviours of people with invisible illness symptoms may be hard for others to truly understand if they haven't lived with them or really seen them.

In his study, Youssif investigated all the related symptoms and factors to those conditions including genetic factors and brain functions during sleep and noted that all the syndromes have a common symptom which is sleep problems.

"Just as painful symptoms can prevent patients from getting enough rest, sleep deprivation can exacerbate the widespread feeling of pain and tenderness brought on by the illness. Lack of sleep or poor sleep can also lower a person's pain threshold, causing fibromyalgia symptoms to occur in otherwise healthy people," he explained.

While it can occur at any age, most patients of fibromyalgia and ME/CFS are middle-aged. Additionally, 80-90 percent of those patients are women.

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