We drift away throughout our lives, trying to please others or our own expectations built upon what we learned that society expects of us. This is not an obvious thing for many, but it pops out when you go through a major setback that makes you review your whole life plan.
We are so anchored in what other people might say of us, in the fear of being treated like an outsider, in that feeling that we might one day be rejected. We do things because it’s been done before, because that’s what people around us or people our age do.
We work ourselves up to put up with an external standard that a lot of times seems so alien to us. This gets revealed to us in the most unexpected ways, but most of the times if comes out as rebellion, frustration or a lack of purpose.
Although we live pretty busy and full lives, something is missing. We get the feeling that something is not quite as it’s supposed to be. Most of us live our whole lives and still don’t find out what that thing is. Hence the disbelief in things like “find your purpose!”, “unleash your potential!”. These are strange things to say when we live pretty decent and fullfilling lives.
But that’s the trick! How much of these decent and fulfilling lives do we really enjoy? How much of these daily activities really make us feel like it’s worth something?
You might be familiar with the feeling you get when you help someone just because he or she needed it. Or when you take the time to listen to a friend who has a major problem and just be there, ready with a kind word and a hug. These type of moments have the power to make you feel at peace. You get that feeling that you’ve done the right thing. Now take that feeling and pass it through each and every activity you do throughout your day. See how that feels. Do you get the same results? Do you feel the same? It’s ok if you don’t. Many people find themselves in the same situation.
Society educates us to be good members of it. It teaches us how to behave, what to believe and what not to do. In order to fit in. And except a few things that spice us up and that we call personality, all that we have is society-crafted.
We are promised a rich life, full of possibilities, products and chances. But is when we face losing all of these things that we get a taste of what society really does. It selects only the useful and productive individuals and discards the others that don’t fit the pattern.
People with chronic neurological illnessess are clearly not fitting that pattern. They become a liability for the social system.
Let’s get a few concepts straight.
What are neurological diseases?
A quote from the World Health Organization explains it all:
“Neurological disorders are diseases of the central and peripheral nervous system. In other words, the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles. These disorders include epilepsy, Alzheimer disease and other dementias, cerebrovascular diseases including stroke, migraine and other headache disorders, multiple sclerosis, Parkinson's disease, neuroinfections, brain tumours, traumatic disorders of the nervous system such as brain trauma, and neurological disorders as a result of malnutrition.
Mental disorders, on the other hand, are "psychiatric illnesses" or diseases which appear primarily as abnormalities of thought, feeling or behaviour, producing either distress or impairment of function.
Hundreds of millions of people worldwide are affected by neurological disorders. Approximately 6.2 million people die because of stroke each year; over 80% of deaths take place in low- and middle-income countries. More than 50 million people have epilepsy worldwide. It is estimated that there are globally 35.6 million people with dementia with 7.7 million new cases every year - Alzheimer's disease is the most common cause of dementia and may contribute to 60–70% of cases. The prevalence of migraine is more than 10% worldwide.”
Dissabilities mean costs, and society has a sore spot for that. And not just only that, but the actual cost for a business that employs a dissabled person looks to be in danger in this situation.
But they have it all wrong! There is an actual bigger cost if you put people on wellfare instead of helping and accommodating them to keep their jobs or make a living fo themselves. Think about all the people that have to financially sustain a dissability cost through their monthly tax contribution. Think about the actual costs of the dissabled person: medical care, facillities and money to help that person pull through life. That cost is actually adding up to be higher than allowing dissabled people to keep working or open their own business.
“Workplace interventions can lead to large gains, both in the short and long term, for employees and employers. Improvements can be seen in worker productivity, reduced levels of absenteeism, and employer cost-saving. These interventions have the added benefit of creating a workplace environment that is health-conscious, providing for easier follow-up with participants.”
(read full WHO.int report here)
Because, let me tell you: people don’t change at all after getting a neurological chronic illness. Neither after they actually get disabled. Ok, they might be a little more changed, but those differences are just emotional, the intellect of that person doesn’t get affected in all diseases. There are a few exceptions, like Alzheimer’s, dementia and so on, but what about the rest?
How can you tell a person that has been working all his or her’s life to be independent and to make a career that you have no place for him or her now that he/she’s ill? How is that fair?
Society runs away from difficult situations. It prefers to be a functional machine that keeps the system into place for as long as it can. But if you throw away people who have chronic illnesses, as a society, you’ll end up with more spare parts than an actual functional machine. You’ll get broken. You’ll stop working.
These people might not be the thing that you need or are used to, but with the number of chronically diagnosed people getting higher as the years come by, we’re facing a real problem of not being able to live a sustainable life as a society anymore.
“The health of the world is generally improving, with fewer people dying from infectious diseases and therefore in many cases living long enough to develop chronic diseases. Increases in the causes of chronic diseases, including unhealthy diet, physical inactivity and tobacco use are leading to people developing chronic diseases at younger ages in the increasingly urban environments of low and middle income countries. Disturbing evidence of this impact in many of these countries is steadily growing. They are ill equipped to handle the demands for care and treatment that chronic diseases place on their health systems and so people die at younger ages than in high income countries.”
(read full WHO.int report here)
So what’s there to do? Accept. Adapt. Overcome.
Accept that we have this situation. It has been a public health challenge since 10 years ago. Adapt the social system to it. Overcome the future societal disfunctionality.
Avoid the day when you’ll find yourself in the same situation. It’s uncomfortable, I know! But little did I know almost two years ago when I was happily working in sales that it will all change as I got diagnosed with multiple sclerosis.
Although it’s not an easy thing to go through, because of all the possible stigmatization and rejections you might face (among other things), it helped me to see the bigger picture.
I’m sure the fact of being a licenced sociologist helped with analyzing society, but it was the emotional part that did the trick. It’s awful to feel like society doesn’t really care about any of us. It’s an eye opener that we are our own safety nets. In the end, relationships are all we have. And in the most desperate cases, even these ones fail, and people are left behind. Are discarded. Just because we don’t teach people about these conditions, their implications and how to manage them.
How did the world become such an awful place to live in? We have expressions like “survival of the fittest” and “the law of nature” to describe the natural selection on which nature thrives.
But what happens when the fittest is not you because you get a dissabling disease? What happens when the law of nature gets you in a wheelchair? Does the world seem fair and just then? Are those beliefs doing you justice?
We must understand that although the strongest are the ones who survive, we are human beings which have a heart and feelings. Helping people to have a chance, to reintegrate them back in the social system or to keep them there for as long as possible is the honorable thing to do.
I’m gonna stop this article now, before my eyes get all blurry because of my tears.
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Until next time, make the SMart Choices that suit your lifestyle!
Love,
Alexandra