What do you do when your crush has invited you to their party, but you woke up this morning with the worst flu you've ever had? You' were fucking excited to go but you can barely get out of bed.
The first time this happens, you might think, shitballs, but okay shit happens.
But what if it keeps occuring? What if you fall ill several times a month? What if you're unable to get out of bed for weeks? Do you panic? Do you take the first Uber to your doctor's office? What do you do?
In The Netherlands there are about 5 million people that deal with this type of situation in their lifetime, because of a chronic invisible illness like a burn-out, Fibromyalgia or Lyme's disease. These illnesses are characterized by symptoms of (joint) pain, extreme fatigue and neurological complaints like confusion and a loss of focus. Some are somewhat temporary, some seem to be chronic.
Socially and medically, the validity of these conditions is questioned.
I used to think: it must be so shit to have a chronic illness. It didn't even cross my mind how it could take ages before you'd even find out what's wrong with you. How alarming and frustrating it is to not find a cause or diagnosis for your illness. Or that, when you finally do get that diagnosis, it doesn't automatically lead to a solution. I'd soon be made aware however, when I got sick myself.
What happened is what I'll tell you in upcoming docuseries S!CK.
If you didn't know, that's me in the picture: A smalltown girl living in Amsterdam. I've struggled with health issues for a long time after highschool, but was also really figuring out my path as a creative person. I've always wanted to tell stories and take part in a communal conversation about things I feel matter. I just didn't know how.
After I took about half a year to 'recover' from illness in 2017/2018, I wanted to challenge myself again and applied for a work internship at VideoBird to develop my visual storytelling skills. I completed that internship with a video portrait I made about Jeroen, who has a immune deficiency. I wanted to combine my love of storytelling and my personal health journey into a documentary(series) and VideoBird has given me that opportunity. I don't want to be defined by my illness, but I can't ignore it either. I come with instructions, so I decided I'd write that instruction manual for myself and other young people in the same boat.
In S!CK you'll follow my quest for answers as an undiagnosed ill person. When you're sick a lot like me and don't have a diagnosis for your symptoms, you'll look into your past, present, the world around you, consult various medical professionals, the internet, others and yourself: anything to find answers. Over time, a couple of diagnoses (ME, Lyme, Fibromyalgia, etc.) appeared most often and seemed most fitting for my symptoms. However, the reality behind these diagnoses is very complex and it's not a case of finding the diagnosis, asking your doctor and getting a definitive answer.
One of the people I came across in my health quest was Dennis (29). After a long journey without answers, he's diagnosed with Lyme's disease.
For Dennis, this diagnosis and the following treatment plan works. However, he hasn't gotten the diagnosis from his regular physician. The standard tests he'd gotten from the doctor for Lyme had came back negative. He recorgnized a lot of his symptoms in other Lyme patients' stories and through referal found the orthemolecular physician that made him do bloodtests in a German clinic. A lot of doctors don't trust these tests to be accurate and won't recommend a questioning patient to take them. The tests are expensive and not covered by Dutch insurance, which presents the already stripped of his income patient with a dilemma: will I or won't I?
For Dennis however, the test worked. Treatment worked. His physical and neurological complaints lessened, which made him able to work fulltime and excell at sports, after having spent months confined to his bed. Stories like these are a dime a dozen.
All that to say: finding a diagnosis is not so simple. These types of dilemma's not only occur in the case of Lyme's disease, they occur with the other invisible illnesses as well like Fibromyalgia and ME. This is taxing for any patient. That's why I want to share my health journey with others.Crowdfunding
We've got great people that want to help with the documentary (series). We still need funds however to be able to rent camera equipment and the likes, cover transportation costs and man hours made. The money raised will go towards making the first episode (about Lyme) possible. I hope you'll be able to help! If not financially, there are other ways as well.Other ways to help
A great way to help us is by sharing our campaign with as many people you know. That way we are more likely to attract investors for our project. You can follow/share our social media platforms for instance. We can be found on:FacebookTwitterInstagram
(Also don't forget to notify your aunt at that birthday party when all other subjects are talked about, makes for a cozy conversation :P)