I'm not sure if it's the TV or Hollywood that brought the concept of romanticised illnesses like cancer and the journey into death into our lives, but it seems like we’re not as afraid of a life of agony as we’re afraid of death. We do love watching movies about how tragic other people’s lives, or saying how sorry we are to the people suffering around us. But we don’t spend a moment on how tragic it would really be if it ever happened to us.
That included me too; until I faced how much my life can get difficult, I never spent a moment of my ignorant life thinking about it. There are many fates worse than death: A lifetime of injury and agony, for example.
My wife’s health issues made me aware of how many people are silently and endlessly suffering in their corners. There are many illnesses, like Long-COVID and ME/CFS, that don’t have any cures available or have been ignored by the scientific community for decades. These people have been left utterly alone, apart from a few doctors who took it upon themselves to try a few things to help. There are hundreds of thousands of people in the UK, and millions in the USA, and god knows how many more across the globe.
These people can’t live their lives to the fullest, and most of them are housebound, some bed-bound. And some, unfortunately, are in a situation so bad, they are imprisoned within their minds. These people, from the mildest to the most severe, they suffer every single day. On average, a Severe ME/CFS patient needs to spend all of his or her days trying not to make the condition worse. They gave up on where they are going on holiday this year, or which new exhibition has come to Tate this month. They have bigger problems than that: If they make a wrong move whilst in their bed the whole day trying their best to exist, they may have to spend the next a few hours to a few days in agony. Their bodies are fragile and work against them. Their needs and priorities are different from ours.
And yet, we conveniently choose not to hear about them. Believe me, they tried their best to make themselves heard. Decades of effort are out into making people hear their suffering. Not just ME/CFS, but there are many post viral syndrome victims out there, not being heard.
Until Long-COVID came in like a wave and swept the nations with disabilities, no one cared enough to put a spotlight on it. It may be a cruel joke, but until enough people got sick, people weren’t aware of their existence. Not because they were oppressed or deliberately kept aside. It was because the people decided not to hear about them because the pain was too much to process. It was because companies couldn’t make enough profit until a large number of people got sick, so they decided to ignore them.
Yet, we’re still where we were 20 years ago. Millions of people are one way or another hurt, and this could have been prevented decades ago if science just cared enough to investigate.