On April 16th 2019, over a hundred ill people with chronic Lyme disease and other tick borne diseases stood in front of the Dutch Parliament in the Hague to protest against the violations of their human rights. Chronic Lyme disease has been well described for decades in medical literature. Yet to this day, the existence of it is denied in public healthcare in The Netherlands, leaving patients out in the cold with no access to care. Inside the Parliament, The Dutch Lyme Association presented a ten step master plan to members of Parliament based on the results of a national survey. The demonstration was unique because it was silent. There was no yelling, no music. They simply wanted to show the government that they exist by being there. For years they had been made invisible because of an incorrect story that has been told about their disease. Some of the members of Parliament came outside to listen to the stories of the victims. These were some of their nonverbal reactions. (text continues below)
Lilianne Ploumen, Member of Parliament for the Partij van de Arbeid
Simon Geleijnse, Member of Parliament for the 50+ Partij
Wim-Jan Renkema, Member of Parliament for Groen Links
Maarten Hijink, SP
Fred Verdult lives with both HIV and chronic Lyme Disease. He was never sick from HIV but became very ill several years ago from a tick bite. Like many patients who can afford it and are able to travel, he relies on doctors abroad for private medical treatment. He feels 80% better now and is the chairman of The Dutch Lyme Association fighting for access to healthcare for all. Lyme Disease can be cured in the early stages of the disease with antibiotics. But the patients who stood in front of the Parliament have gone undiagnosed for years or decades and developed chronic Lyme disease. There is no cure but with treatment, people can often heal from many of their symptoms and can get back to leading their lives.
Fred Verdult, chairman of the Dutch Lyme Association (Lyme Vereniging)
Lidewij Boeken of the Dutch Lyme Association films a live stream for the patients who are too sick to come to Parliament. A survey of over 1600 patients showed that 1 out of 2 patients are rarely able to go outside. 1 out of 6 patients live in a dark room most of the time. 3 out of 10 have thoughts about ending their own lives. Lyme can infect the brain and cause psychiatric symptoms making patients even more vulnerable to suicidal thoughts.
Rens Raemakers of D66, Wim-Jan Renkema of Groenlinks, Maarten Hijink of the SP
25% of new Lyme disease patients are children. Parents of sick children are sometimes threatened to have their child placed out of the home. Sometimes it happens. The mother is then accused of making her children sick or faking the child’s illness (Munchausen Syndrome by Proxy). The Dutch Lyme Association asks Parliament for an investigation.
Naïm, the youngest protester
“Who was told by doctors their illness has a psychological cause?” Much like AIDS, chronic Lyme disease comes with a stigma. Lyme disease is often thought of as imagined by the patients. They are accused of faking or exaggerating symptoms. Severely ill patients are often mocked by doctors. Young women are stigmatized even more because they are already less likely to be taken seriously by doctors. Women’s neurological symptoms are traditionally thought of as an expression of underlying unresolved emotional problems. There is very little to no public debate in The Netherlands about discrimination in the healthcare system.
Chronic Lyme patients in front of the Parliament in The Hague. Background: ‘I celebrate my vote, 100 years general suffrage’
One of the main problems with chronic Lyme disease is that there is a misconception of what the symptoms are. The Dutch health authorities speak only of fatigue, muscle and joint aches and poor concentration as the chronic symptoms of Lyme disease. These mild symptoms do not need medical treatment in the way of reasoning of the Public Health Ministry. These symptoms may occur but it is only a small part of the story. In reality, the symptoms can vary between a skin rash and death and may include visual problems, paralysis, heart infection, seizures and dental problems. The World Health Organization recognises among others Lyme Dementia and a form of neurological Lyme that is very similar to MS. Based on these misconceptions, disability is often denied as well as welfare. Even wheelchairs, which are free for anyone who needs them, are often made unavailable by the government to people with chronic Lyme disease.
Simon Geleijnse listening to a disabled chronic Lyme patient
Due to lack of access to care and income, many Dutch patients depend on their families for food, nursing, housing and financial support. It is common for multiple family members to have the disease. The disease can be passed from mother to child.
Wim-Jan Renkema speaking with the father of a disabled patient.
Lilianne Ploumen of the Partij van de Arbeid and Carla Dik of the ChristenUnie asked the Under Secretary to respond to the master plan and reflect on why so many ill people came to Parliament. However, Lyme disease has been discussed in Parliament before and nothing has changed for patients since. The Ministry of Health has showed little to no insight into the reality of the problems patients experience. And even less awareness of the mere fact that these patients exist. For years patients have been sent away by doctors who didn’t believe them. In their absence the wrong story about the disease has had a chance to stick in the minds of a generation of doctors. Now patients are sent away because they don’t match the story: their symptoms must not be real, or it probably isn’t Lyme. Now the question is if the government will make a genuine effort to believe patients over a story that has little to do with reality.
Published on and featured by Medium, May 2019. All rights reserved Sara Meijer