Long lasting

Twenty years ago, while studying at the art academy, I was wearing lime green nail polish and someone said it looked ‘disgusting.’ The assistant teacher and I got along really well and we laughed about her remark. At the same time I suspected there were others who did not have the guts to state this opinion out loud. Either way, I could not care less, knowing I was not solely defined by the color on my finger nails.

After almost twelve years, I now know that there is more to me than being ill. But the I-could-not-care-less attitude is hard to maintain.
One day in March 2005 I left work, because I was ill. In the next few weeks I did not return, neither started my promising new job at an art center: I was still ill. After ten months a doctor specialized in M.E. concluded that I fitted that description: Myalgic Encephalomyelitis. This answered a few of my questions, but raised even more. I went from a mysterious viral infection to an undetectable illness.
Extreme fatigue is the most known, but not the only characteristic of M.E. Lots of patients are troubled by neurological and gastrointestinal symptoms, sleeping and blood flow problems, and a massive energy crash after minor extertion, also known as post exertional malaise. Until this very day, there is no test for being diagnosed with Myalgic Encephalomyelitis. This means that I, and many, many more, are misunderstood about being seriously ill and fighting the general idea that we are unmotivated, malingering or even plain and simply lazy.

No federal funding of biomedical research for as long I am ill

In the same year I got ill, the Dutch Council of Health came with a report on M.E. regarding scientific literature on chronic fatigue. It acknowledged the immune-related origin, but at the same time suggested nothing but cognitive behavioural therapy in order to reverse the immobility of these patients. During my twelve years with Myalgic Encephalomyelitis there was no federal funding of biomedical research in the Netherlands at all. This emphasizes the stigma that it is all in our head… In March of last year, a new committee by the same Council of Health was installed to analyze the current state of science regarding M.E. and its result is expected this Spring.
I feel left out by this Dutch government. The same government that withheld a part of my pay for every working hour in my life, but denied me my disability allowance all the same. Furthermore, no additional financial support was granted to help me with my chronic illness. Any civil servant who takes a close look at my tax files might mistake me for a stay at home mum without kids or even a desperate housewife. Desperate I am, but a housewife? Hardly. If I manage to sweep the living room with a dry mop once a week, I proudly punch the air.
In all of this misery, I am not alone. I am not alone with my symptoms, neither am I a rare example of not having the financial safety net that I was counting on. There are plenty of people who regretfully have to go through the same pile of a certain four letter word all over the world. More M.E.-patients who seem to be solely defined by this stigma.

In between bumps on the way to recovery

My life is a bumpy road and unpredictability is one the characteristics of M.E. I cannot explain what it feels like to get up every single morning, hoping for a good day while at the same time knowing very well that not that many people care for chronics with M.E. The M.E. story needs to be shared or we’ll never get any research going. Therefore this is me, writing yet another piece on the subject of this undetectable illness in between the bumps that hit me. Even though I spent twelve years of my life lying on the sofa feeling miserable, I am also stubbornly hopeful. Will the current climate of not knowing about M.E. change one day?
Thankfully, research regarding M.E. is done either through crowdfunding or because there are indeed a few governments concerned about the well being of these patients, such as is the case in Norway. Either scientists find evidence of chemical causes — such as brain inflammation or irregularities in the metabolic system — or are working on a cure, exploring the possibilities of something like Rituximab, a cancer drug.
I probably should not be saying this, biting the hand that I need feeding from and all that, but personally I think the current situation that M.E.-sufferers are dealing with is disgusting. Disgusting, yes. It would be great to hear from a politician, a regular doctor from a regular hospital or health care center, a billionaire or even a celebrity to prove me wrong. I would love to be proven wrong by someone saying out loud that one does care for people with M.E. whose lives are ruined while the worlds keeps turning.
If biomedical research is funded any time soon, I might be able to be a part of that outside world again and capable of buying a new nail polish in a store all by myself, or even be teaching art. And perhaps in another period of twelve years, all of us will be laughing about this near-sightedness as if it was nothing but a bad joke, shaking our heads in disbelief.

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