Today is the start of the second major World Protest to change the situation for all chronic Lyme disease sufferers who don’t get any help from healthcare. The first protest took place last year, with 30 countries involved, this year there will be slightly fewer that demonstrate, but most still participate online in different ways, more cities are also participating this year than last year.
Unfortunately Sweden’s participation got cancelled this year. And since the lies and misunderstandings have been spread both locally and internationally, and now even a preposterous conspiracy theory has been knitted together, while the admin has blocked me and threw me out of a group (where I’ve helped many sick persons for several years), so that I can’t explain this privately in the group, which I would have preferred, I’m now compelled to write publicly about what happened to sort out the worst crazy things before they escalate even more.
It all started in the fall of 2012 when I started the Worldwide Lyme Protest, and since then I’ve led the process as an international and national coordinator. I’ve had the invaluable help especially by some of the other countries’ coordinators during the journey, without them this whole thing couldn’t have happened. Personally, I’ve kept a very low public profile, because I think it’s important that as many sufferers as possible get in focus, so that it gets clearly visible how big the problem is. So it’s still not that many people who know who I am. My intentions have always been good, I’ve done everything that was possible to show the world the problem situation and try to change it, I’m burning intensely for the question, and feel compassion and empathy with all victims. For their sake I’ve not been able to stop fighting for this in spite of being very sick myself. I am an idealist who believes that change is possible, and I would fight until death for what I believe in. I’ve really given everything for all of you who are sick. Internationally, nationally and at an individual level.
Unfortunately, the situation has been exploited by a person who seems to have an inexhaustible need to be at the center all the time, and who has acted as a self-appointed leader. The same person has, besides Lyme disease, a diagnosis that unfortunately makes her extremely inappropriate as a leader, since she can’t understand people’s emotions and interprets everything that is said literally and without insight. She therefore doesn’t understand how deeply she offends people by scooting forward as a bulldozer. I’ve experienced this on several occasions, no one is safe from her sharp mood swings and misguided actions.
We’ll now move backwards a little to what happened to become the triggering factor, but not the actual cause of why the protest was canceled in Sweden this year. Two members of the planning team (members of the national Lyme Association), first promised that a new fund would sponsor my trip, and one of them expressed that it would be an ”honor ” if I was present there. I had already accepted to not be able to attend this year, when they unexpectedly came up with that promise. Then I was happy and prepared myself for it. Then they suddenly without a warning withdrew that promise, on the grounds that they had instead decided that a lectern absolutely must be transported there for the only speaker (guess who!) , the transport would cost a lot, and that this was a very important priority (that she apparently needed to stand a few inches up in order to speak, and can’t stand on the ground like ordinary people). It didn’t matter to them that I (as the one who started it) and other sick persons (who contrary to me had applied for money for the trip and were refused to get it due to the expensive lectern transport costs), then couldn’t attend…. Yes, that’s where it all burst for me. One doesn’t promise things and then take them back. And one doesn’t prioritize things in front of people. In my world, that is. Then it went as it went. This coincided with the worst Lyme flare since 2012 for my part, so it was the fourth day with explosive migraine and flu exhaustion, and in the midst of building work in my apartment, and also in the midst of lots of other things that happened at the same time, two friends who unexpectedly died, and lots of things that suddenly got messed up. It all cooperated so that my patience wasn’t quite as outstretched as usually, and so I therefore canceled the protest at that point.
Their actions were the last straw in a long line of tough things. It didn’t help that the self-appointed leader then scornfully and aggressively urged me to kill myself. At that time I was already severely depressed and didn’t feel that I wanted to live any longer. I feel that way very often. Depression is my worst Lyme disease symptom, which has been around ever since the first bite that made me sick. I’ve spent large parts of the last few decades in a compact pitch black darkness. I wouldn’t wish that ”life” even for my worst enemy, it’s a hell, it’s pure torture. Any normal human being would understand that you don’t bash a person who is already down and fighting for his life . But not she. And that’s to cross far over the line. This is unforgivable. Several other persons immediately joined in on the rough bullying.
Then I felt clearly that it was the right decision to cancel the protest, since that’s not the way to behave towards friends or even distant acquaintances, not towards any human being. It was also initially cancelled even before the planning stage at the beginning of the year due to harassments by a person who behaves like a psychopath, who attacked me and several friends and still gets to run wild in search of new victims. This was misinterpreted by the self-proclaimed leader as a ”conflict”. There was no conflict I was finally persuaded to agree on organizing a protest in Sweden, despite everything that was boiling in the bottom of the pot. In retrospect, it seems like it would have been best to put an end to this already back in January. Arranging this kind of thing requires a good working relationship and that everyone support each other, not that there are some who fight against the cause and are spreading lies and slander.
I thought the bullying would stop if I was quiet for a few days, I was still too deep under the ice to write something anyway. I thought they would realize what they had done and regret the evil words, but no, it was to hope too much. Instead they took it even further.
A scam site was soon constructed, where they stole the official name and header, and pretended to belong to the World protest. The admin for the scam page, however, openly distanced himself from the origin – Borreliaupproret, which is the Swedish name of the protest. It could hardly get more crazy. There were also strict requirements for the scam page, people had to join the local Lyme Disease Association and then ”apply” to eventually get to write on the page. On the contrary, everyone is welcome to write on the official pages for the protest which I’ve started.
Latest in the line of absurdities is a brand new conspiracy theory, that I would have signed a kind of contract (which doesn’t even exist!), and that there would be rules that limit all countries’ ways of protesting. Everything that was referred to me (haven’t seen it myself, since I was blocked at the same time), is a pure lie. I’ve tried to find out how it started, and am guessing that it’s based on misunderstandings due to language problems. Which of course doesn’t excuse anything. The creator of the conspiracy theory turned abroad to someone and asked about this instead of asking me directly, and something must have gone wrong there. All the representatives of the countries know that there is no contract. All countries support our statutes (which we have written together) though, which are available on the website of the protest, which describe the changes we require, but that’s a totally different matter. It’s no secret. There are no secrets here… 🙂 Then, this apparently has been built on (nothing grows faster than conspiracy theories, as I’ve seen during this recent experience), and gained immense proportions. I hope it bursts now as a soap bubble in the spring sunshine.
The only good thing that the conspiracy theory seems to have brought with it was that the scam site suddenly was erased, since those who stood behind it apparently no longer wanted to be associated with the World protest. While they vomited bile over the World protest, they still tried to slip in through a back door anyway. Is that schizophrenic or what?
This year is probably the last year that large protests are held around the world, next year we plan to focus on other things that will hopefully have a better effect.