A video call with Adelien by Meta de Lange
This statement came across as shocking or over the top to many readers, who never experienced Lyme at close range. You could read about it here, but it’s in Dutch.
People with chronic Lyme sometimes seem to lose all hope. Because of this article, I talk with Adelien on the phone. The disease dictates her life, but it is the system that drives her to despair. Adelien’s battle should not occur in a civilized country like the Netherlands. Or am I being naive? Her main fight is about the most basic of human rights: a bed, medicines and bread. “Apparently I do not have the right to live”.
Instead of tired of living, on the phone Adelien sounds very much alive and geared up for battle. She ensures me that she is not planning to jump in front of a train yet. She is not depressed, but just realistic. And regarded from an objective viewpoint, her situation indeed does not look good. The consideration to commit suicide, of which she spoke in that article, had been a cry for help.
Adelien’s story shows that the famous Dutch health care system (again declared the best in Europe by the European index EHCI in 2014) is a hell for people who are ill but do not get that fact recognized. No treatment is paid for. And, although you are seriously all, you are expected to fend for yourself and to not stay at home being ‘lazy’. Because medical doctors do not regard you as a patient, the acceptance in your social surrounding also diminishes. ‘You must have brought this unto yourself.’ Adelien is now tested unfit to work for 80 to 100% and receives a small disability benefit, based on the diagnosis of a ‘psychic disorder’. This makes her fit the profile of a classic Lyme profile: no recognition, but deadly ill.
The bizarre part of Adelien’s situation is that her attention is constantly distracted from her own health process, because she needs to deal with all kinds of financial problems. How can one live, if you need to spend more than you get in, while also carrying a 110.000 dollar debt – with nobody to help you? This debt was caused by her employer ending her contract, when she fell ill. She has to sell her house at a bad time in the market, far below the price she had bought it for. From that moment onwards, Adelien misery started to pile up.
Time is ticking. Adelien tells me during our phone call that this month her groceries will be paid for the last time by some small fund, which she could ask for temporary support. She has no idea yet where to get food for the next month. Because of her multiple food allergies, she cannot stand most of the food that the Food Bank (a Dutch institution where poor people get something to eat) provides.
In a letter to Dutch minister of Public Health Schippers, Adelien has written: “What should I do? I can pay for either the health insurance, or for food and medicine or for a roof. Which one should I chose?” Without an adjusted diet and supplements, Adelien cannot live. Living without a roof over one’s head is also not really an option for someone who is this ill, so Adelien was forced to temporarily stop paying her health insurance. Now she suffers the consequences: a monthly fine of 170 dollar, to be paid to the Care Institute. Now she has a shortage of 700 dollar each month.
Adelien has tried everything possible to get out of her current situation. She has become a professional expert in researching and applying to all kinds of funds, subsidiaries and rules for foundations and collecting money. Nothing applies to her now. Even collecting money for her does not seem possible. Once she starts doing that, she is kicked out of her disability benefit. She is very organized and has everything she wants to show me at hand. Adelien shows me many letters that she has sent to lawyers, government agencies and other institutions. She is often misunderstood. People who visit her home are surprised, because what they see does not fit their expectation. They seem to think that if someone is in financial trouble, their house should also be a mess. So if they see that it is clean and in order, they conclude that her health is ‘not that bad’.
Everybody who hears Adelien’s story acknowledges the absurdity of her situation, yet nobody seems to be able to help her. A judge recently said he had never seen a legal file like hers. Her bank did a proposal to erase her debts, but with the condition that she had to pay 35,000 dollar at once. One lawyer after the other disappears, because they also cannot figure out how to find any solutions. The Dutch government replied that they deeply sympathized, but cannot deal with individual cases.
Adelien received many reactions after the article in the Hoogeveens Courant was published, but her wish for a solution was not answered. During our conversation I felt an anger at ‘the system’ arise. But feeling angry at the system is the most powerless and meaningless emotion one can have, since where is the focus for that anger? Can anybody really be blamed? Or does one have rise above blaming, as the wise say? It seems that whatever humans create will eventually turn against them. At least bureaucracy does seem to do that. Because whatever big and dominant social construction we have come up with, Adelien is its victim now.
‘It would be toobizarre if suicide is the only solution?’ Adelien challenges me on purpose. She is not yet given up yet, but can see no way out anymore. I fall silent and I am reminded of another interview I did, with Arlene. So I carefully ask Adelien if she ever considered the possibility if her disease can carry a message for her. She immediately seems to understand what I’m talking about and answers: “Everything has a reason. Maybe it is no coincidence that especially young women get Lyme Disease. But I’d rather not talk about the energetic or spiritual aspects of Lyme, because I don’t want to be stuffed in the corner by statements like ‘Oh, let her be; she is crazy after all.”
After our call I have mixed feelings. Fortunately, the pugnacity of Adelien dominates the powerlessness of her situation. While this side wins, I assume that her statement for euthanasia will remain in her doctor’s drawer for a while longer.