Eefje's interview
Error
How did all start?
It all started when I was 14 years old (2003) and just having a relaxing evening with my parents on the couch. With my left arm I put my empty cup of tea on the table and I just started screaming, crying, .... It was a tremendous pain but I couldn't describe exactly how it felt. Growing up between two cool brothers, I wasn't the kind of girl that would cry or complain for every little thing. My mom didn't think twice, put me in the car and drove to the emergency room. A period of false diagnoses came my way.
Do you already have a diagnosis? How long did it take you to get it?
I don't remember how long it took. It must have been something like half a year or something. All I remember was that before we knew it we were sent to the biggest hospital of Belgium. Everybody knows that's not good news. When the doctors there didn't even know what they were doing it became pretty clear that my sickniss was something rare. Unlucky for me I became a testperson. After some wrong diagnoses they gave me the diagnoses of AVM but they gave me the wrong treatment.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I'm being treated by a vascular team. They give me embolisations (I lost count). Every doctor in Belgium refused to operate on me except one intervention radiologist. He is my hero. The embolisation don't cure, but keep me alive.
What has been the most useful thing for you so far?
For pain: Meds, icepacks, embolisations, massage, rest and just not crossing my boundaries. For mental health: Travel, be open to family and friends about the pain, the worries, the dreams, etc. and write... I write every day and it's my way to keep myself sane I guess. And people, I need people in my life. Although sometimes I don't see peeps for a long time because my body doesn't allow to act socially (even if it's on the sofa in my own house) I need them to be happy. It's a way of just finding the right people, who you feel comfortable with no matter how you feel or no matter how heavy you are hallucinating because of meds.
What have been your biggest difficulties?
Dealing with daily chronic pain, growing limitations, not fitting in the system of society, having to stop working (terrible !!), cutting down social meetings, dealing with surgeries that are just temporary, dealing with hospitalstaff - nurses and doctors - who treated me as a number and not as a human, losing faith in my body and my future (but also regaining it), dealing with documents about euthanasia (just in case), thinking about how long and how hard I want to keep fighting, living under the povertyline, etc etc.
How has your social and family environment reacted? Have your social or family relationships changed?
Ofcourse relationships change if you have a serious condition like this. The relationship with my nucleair family is good but I tend to hide my pain from them, so they don't really see the reality of my world. Everybody deals with it in their own way but we do our best to be open to each other about our ideas, hopes and fears. I lost a lot of "friends" because I stopped going out or stopped acting like a crazy jumping rabbit, but the friends that I call my people today are all souls of pure gold. The relationships are more real and intense. I call them TeamEefje... Or, my love bubble <3
What things have you stopped doing?
Sports, going out, acting funny or like a clown, lifting up heavy things, stressing about things that don't matter, taking life for granted, taking my body for granted, dreaming about living abroad - Still travel though, etc.
What do you think about the future?
I take life day by day. I started my own non-profit organisation about this condition because I don't have the ability to work no more. In this way I want to have a useful daytask, open up about being invisibly sick and trying to help other with it.
So far, which years have been the best years in your life? What have you done during them?
I loved the year I became 17, although I was already sick at that time. Don't ask me why I loved it, I just remember a lot of smiles. Which good years have been the best??? I can't answer it like that. I try to see a part of the world every year, so I could probably just tell you: "Every year I make some travels and those are the best times in my life, no matter what year."
What would you like to do if you didn’t have your condition?
Sometimes I think I got sick to protect myself and the world from my crazy behavior. I would jump out of plains, would be building schools and hospitals in Africa - I would not live in Europa, that's for sure - I would dance, still do sports on a high level, snowboarding, etc. I would probably just work off my ass for a few years to then leave and never come back. I mean... Leaving to work in a developping country as I did when I was 20/
If you had to describe your life in a sentence, what would it be?
Everything is 50% but that's ok.
Finally, what advice would you give to a person in a similar situation?
Open up to family and friends about your physical and emotional boundaries. You are sick, it is oké to ask for help -- Took me 15 years to figure that out. Also... visit www.monsterenhetmeisje.com for more information about AVMs.
