This is a translation for my non-dutch-speaking friends from the post Dat was een klap onder de schedel. Some of the little jokes and nuances are not translatable, I have tried however to be as secure as possible and used google translate (all that went wrong is their fault! :) ).
Well, here we go. The steam is sufficiently pressurized and ready to be blown off. This is my contribution to # stoom-afblazen (steam-blowing).
I have dared to get sick. I even risked becoming so ill that I can no longer make a measurable contribution to society. This is not how I imagined my future of course and in that respect my heart is already quite a bit in pain. I am not the only one who suffers from the loss of that contribution. Society is also bothered by it, because now I cost money.
The disease I have contracted is a difficult illness. The doctors and scientists have not yet reached a consensus on diagnosis and treatment. This has had as a result that getting a diagnosis and treatment took a long time. I have Lyme disease and Bartonella in my body and my brain. It is a disease so colored by controversy that I stopped explaining why and how it is that the diagnosis is really made. After all, someone who wants to believe that my illness is caused by stress and does not want to listen to the doctors, I can not convince either.
My # stoom-afblazen (blowing of steam) is about a small detail of the nightmare I ended up in. We have an institute in the Netherlands called the UWV (an institute that assesses whether you are eligible for a benefit and also has the task to pay it), which I have always thought is there to help if you contract a disease that make you unable to work. I imagined that the professionals who work there, look very carefully at what you can do and can not do. That was pretty naive of me.
The insurance doctor wobbled my leg and I was able to stand on my toes for a second and this made them decide I was able to work. At that moment I was less ill than now but there was already one letter from a doctor that I might never be able to work again and a letter from my physiotherapist. She wrote that although I was very tough and willing, I had a pain level of 8 and that I first had to get better before I could be building up and expanding activity (It was not written exactly in these words, they were difficult words and jargon).
I no longer received a benefit and the time of writing objections arose. Shoulders were shrugged and responsibility was dismissed. Our financial situation became more and more annoying because our savings account was running out and we were very frustrated. it slowly began to dawn on us that if we went ahead with objecting we would end up in court.
It was a difficult choice to take the case to court. The whole situation really caused a lot of stress and we both wanted to give up. The UWV is very good in threatening and undermining language. In the meantime they had been so condescending and mean that I felt more broken down than I had ever done at the art academy (and they are known for breaking down and building up). I felt like a low-life, a parasite and a unworthy criminal. But we got support from family and friends and one day I realized that not everyone has that luck.
So many people have this disease and not everyone has a loving family like me. I also realized that the serious degree to which I have the disease also gives a clear picture of what the disease can do if its not treated. It gave me a chance to be able to contribute to society in this way. Perhaps to make way for the people who come after me so that they have less trouble.
My lawyer was honest, he did not see how we could win this despite me being clearly ill. But I was stubborn on the idea of the social contribution. Maybe if there were enough people who kept on fighting, we could gradually grow understanding. Fortunately, he agreed to represent us. I used my last bit of savings to pay a contribution to him. It took a lot of time to ask for the paperwork from the doctors and in the meantime I was so ill that I could no longer shower myself. It was mainly my spouse who had a new full-time activity and arranged everything.
The lawsuit came and the judge was immediately clear. Three doctors had stated that I have this disease. A highly graduated physiotherapist and an occupational therapist had stated that my ability to work was too low to work without incurring additional damage on my body. Where did that doubt the UWV has about me come from? The lawyer of the UWV could not answer any questions from the judge. Questions that we also had asked, where now asked by the judge and that made me feel really heard by our court system. Our lawyer then said that we should not be mistaken. The judge could now have an opinion but he had to be able to substantiate that opinion with our laws.
After several weeks in which I was convinced that we would lose, we were informed that we had won the case. The judge had told us we were right! The UWV was no longer allowed to deny that I have this illness and all previous decisions were destroyed. The UWV indicated they would not appeal.
Now the part of the story is coming that makes me so angry. Are you ready to be exposed to the risk of becoming deeply disappointed in our system?
The UWV has hardly changed anything in the papers. It says now that I have this disease and in the FML (function-options-list) there is an extra check (which would have no consequences for my functioning at work).
The worst thing to me is that all decisions since the first objection have been made by the same insurance doctor. An institute of our government that works as an executive organ can thus deal with a court decision.
There are a lot of technicalities that I could use to explain everything, but those are details that do not change the story. At the same time, it doesn’t put the UWV in a better light. The infection in my brain causes problems with speaking. Words, idioms and proverbs go wrong.
'That was a blow under the skull', I said when I tried to explain how hard the UWV's remarks had hurt me. Of course, the idiom should be 'a punch under the belt' (a dutch idiom coming from boxing, it tells about an unnecessary mean punch). In my social circle these things are now called Sanneisms. Because they are often correct for the circumstances.
Sooooo difficult the UWV. I know we all tend to speak terrible about them, but to be honest: they are also only trying to do their job and filtering who is messing with them and who not.
It sucks they are not acknowledging you complaints. And exactly what you say, a brain infection is something to not take lightly. I can imagine this gets under your skin and that you feel very offended.
I hope that they turn by fast;) (snel bijdraaien)
I know their job isn't an easy one. They have protocols and targets and must make hard decisions. My case is reviewed in a thesis thats written about how UWV sees disease and people. The researcher said that when he took my case (anonymous) to them. They have told him mistakes are made (thats why I know 3 times the same insurance doctor is not okay and thats it is not normal to treat a court order like that). I am angry at the insurance doctor because of the mistakes but I also know he is probably under a lot of pressure. I wish we could make a distinction between real health problems and fake ones for sure.
I wish I was not offended on a personal level. It would have been easier to deal with. But the impact on my life is really big. I have lived for more then a year without money. I didn't need that extra stress :).
At this moment my lawyer is working to tell (I don't unserstand this completely) the judge what was done with the court order. I hope we don't have to go to court again.
My treatment is working, Since december I am able to draw and to write and to read (through filters). So I truly hope I will be able to work again. I had a great job as an teacher for painting and drawing. They want me back when I am ready. How lovely is that?
I've had my fair share of System Failure with regard to the (high-functioning, normal IQ ) Autism of my son. The letter of the Law is on the side of the automated, robotic, materialistic life. The fine print of insurers and employers is on whatever side the law gives the best protection for the least expense. I hope you find support in us who can read between your lines and find you to be full of resilient stamina despite your debilitating illnesses.
Thank you! That means a lot. In the specific way you wrote I see you have had to deal with the same sort of closed doors and unexpected walls. I am sorry you had to go through that. It is frustrating that money is so important in decisions made about our life. I know three people with high functioning autism, they are all close to me. I especially love their humor, obsessive knowledge and their golden hearts. I hope that your son has find his way in life and stress is staying away as far as possible.
Thank you for your loving words. My son's life is as stress-free as I can make it! I really believe that's the best we can do for those with Autism (accommodate, facilitate and protect). A sense of humour always saves the day for him - he's a very jolly Autist! (but the good humour-front can be a challenge for those with Autism - the other two in my own family have very little of it!).
I am amazed at the progress you have made and so happy your treatment isworking. This renews your hope, and hope is life (for all of us).
That's the best and most loving you can do for him. Keeping stressors away.
I am very happy I have gotten this chance of becoming more healthy. I know it will be a long road but I am fully prepared to go for it. Thank you for your support!!!
I am very sorry to hear of your struggles with the system over there. In the US we have a similar system that detects whether or not people should receive disability benefits. Many people have to fight for a long time, and get rejected multiple times before they finally receive them. It is a hard process. I hate to hear it is like that in other countries. I have a friend who's mother suffers from lyme disease. It flares up in her body, then goes away, then flares back up again. It is very serious. I am so sorry that you are having to suffer from such a terrible illness and fight a hard system.
I am sorry to hear about your friends mother. I know there are many but it is shocking that almost everybody I know has somebody else who is fighting lyme disease they know of.
It is hard to fight two fights and I hope in the future there will be a solution for institutes to be sure about the health of the people asking for help. Probably it is to idealistic to have that hope but still.....
You are definitely in my thoughts and prayers! <3
And you are in mine <3. How wonderful is it that we pray for each other at different sides of the world.
That is pretty wonderful! Thanks! The test went great today. It seems to be benign according to the doctor, and they will be watching it. I have some other issue that I have to go for a minor outpatient surgery tomorrow though.
Thats great news! What a relief that must have been. I am glad they will be watching it, feels like the right thing to do.
I hope your surgery will go perfect and you will heal well.
Thanks! It is a relief about that testing. However, I am out of work for rest of the week due to my procedure today. Gosh it was painful. I was fully awake since it was an in the doctor's office kind of procedure. I am glad it is over, but I have to go through the healing process of that. I could have done it in the hospital, but it would have been way more expensive, so I opted of in the doctor's office and screamed like a big baby.
Hugs
:) hugs to you too
I was wondering how I missed this post, but that is why I always check on my peeps rather than rely on my feed. What a way to find out that health insurance is not about truth, but rather, what can be proven in Court and that every detail can evolve into a new case after you just won your case. Hugs!
Dat is de beste samenvatting die ik tot nu toe heb gelezen. Ik pik hem van je! Ik vind bijna nooit de artikelen in mijn feed inderdaad, ik zoek ook de mensen specifiek op. Ik moet nog verder opruimen in mijn volgers. heb tot en met de D nu uitgezocht
Ja, ik was er al meer dan 20 jaar mee bezig in een ander land waar je veel harder met de feiten geconfronteerd word. Samenvatting mag gepi.. uh, ..mag je hebben *<||:^)
Mijn probleem heeft tot 2006 nodig gehad voordat ik de hulp kreeg die ik nodig had. Vanwege de door banken veroorzaakte crisis raakte ik 2 jaar later mijn verzekering kwijt omdat die aan mijn werkgever verbonden was en de goedkopere opvolger de al bestaande conditie eerst niet wilde dekken.
Ja ik dacht op gegeven moment ook dat ik de volgers terug wilde brengen naar minder dan 100, maar kwam er ook achter dat de mensen waar ik echt om geef niet zomaar uit mijn geheugen verdwijnen en ik ze toch wel opzoek als ik even niets gehoord heb. (zoals vandaag) De push-notifications van YT werken goed voor dat doeleinde; ik volg er meer dan 400, maar krijg apart bericht van publicaties van een stuk of 10 mensen die ik liever niet misloop.
20 jaar! Dan heb je ruim de tijd gehad inderdaad om krachtige samenvattingen te maken en je wereldbeeld aan te passen (hoe naar het ook is dat het nodig is). Dank je wel dat ik hem mag hebben, ik wilde hem liever pikken maar ik had mij mond alweer voorbij gepraat :)
Jouw verhaal is heftig zeg, zolang moeten vechten om hulp te krijgen. Dat vraagt doorzettingsvermogen en een heleboel geduld. Het lijkt me vreselijk om dan 2 jaar later alweer in de vechtmodus te moeten. Ik weet dat het niet anders is, maar wat vind ik de wereld af en toe raar in elkaar zitten zeg.
Ik vergeet de mensen niet maar mijn brein doet rare dingen en ik vergeet de details, zoals de namen en waar ik ze gezien heb. Als ik mensen tegen kom die ik interessant vind schrijf ik de naam op. Verder laat ik een comment achter zodat ik terug kan vinden wat ik interessant vond aan die persoon. Op zich voor mij wel een goede omdat het me uitdaagt meer interactie aan te gaan en dat bevalt me wel.
Nou, dat doorzettingsvermogen valt best wel tegen. In 2006 had ik mijn enkel weer eens gebroken, voor de zoveelste keer, maar heb toen de dokter gewaarschuwd dat hij mijn been niet in het gips kon zetten. Hij liet me geen keus, of gips, of niets. Gips dus. Vier weken later kwam ik terug met de eis dat het gips verwijdert zou worden. Na lang aandringen werd het gips verwijdert en kwam hij er achter dat er geen huid meer onder zat, en dat was het begin van hulp krijgen omdat op dat moment de dokter geen keus meer had.
Rare wereld, jazeker!
Oh, wat een naar verhaal zeg. Groeide de huid weer gewoon terug of was het een uiting van een aandoening? Wat gek eigenlijk dat er eerst zoiets moet gebeuren voordat de dokter luisterde. Ik kijk het filmpje morgen