This all came to an abrupt end when I had to cancel a business trip to Italy in March 2015, as I suddenly experienced intense fatigue. After numerous tests it became clear that I had contracted the Epstein Barr Virus (EBV). So I thought that after a few months of rest I would be back in the game, but my condition deteriorated and no doctor seemed to have an answer as to why. In the Netherlands, I was diagnosed with post viral fatigue syndrome and all medical care was stopped as there was no readily available treatment. Despite being bedridden and in constant pain, doctors seemed to disregard how I was truly feeling and declared my condition a result of overworking or my age. They assured me that graded exercise therapy would cure me. However, I had read that this could worsen your condition, so I was hesitant to follow their advice. Instead, I took mindfulness classes, but of course this was no cure either!
Luckily a friend recommended a doctor in Belgium early on in my journey, who diagnosed me with chronic lyme. From that moment on, I have made it my mission to cure myself and have tried everything to heal. In the past 5 years I have experienced 2 periods when I thought I had fully recovered, but unfortunately I relapsed both times. I also never fully made it back to work and was eventually laid off due to my absences during a reorganization. Although this was of course a setback, it gave me the opportunity to ask myself what my next steps were going to be. The answer came quite naturally. Over the course of my illness, I spoke with numerous fellow patients who were experiencing similar medical issues and continued to suffer without proper medical guidance from doctors. I realized I was very privileged to have access to a doctor abroad who could answer my questions and who actually treated me holistically. I also had the opportunity to go to my doctor’s clinic abroad twice for three-week retreats and experienced how it benefited me – not only physically but also mentally. It made me stronger and made me realize I had to make the best out of my life within the limits of my disease.
Most patients in the Netherlands, Europe and the US don’t have such luck. I found this harsh reality of a lack of medical care hard to accept, especially for children confronted with this disease or any other multi-systemic disease. As a result, I decided that I wanted to help fellow patients and volunteered as a board member with the ME/cvs Vereniging. This is a Dutch association looking after the interest of people with ME/CFS, which has a strong overlap with patients suffering from chronic lyme and other multi-system diseases. Although this volunteer work is very rewarding, most of it focuses on long term goals, particularly getting biomedical research started in the Netherlands. As I am not a very patient person, I also wanted to do something more concrete for individual patients. So when I heard that my doctor’s clinic had closed, I knew that this left a gap that needed to be filled. I realized that with a recovery clinic I could truly make a difference for patients, as I had personally experienced it.
This was when I realized that this is my purpose: helping others heal. Now I am committed to fulfilling my mission by helping fellow patients in their journey towards recovery at our clinic. I approached this project with clear goals in mind:
We want patients to feel better by providing intensified medical treatment.
We want patients to feel stronger by giving the opportunity to exercise so they learn to trust their body again. For me that was a real eye opener. As an athletic person, I exercised fast-paced. At my doctor’s clinic, I learned to move at a slower rate and discovered that my body could handle slow-paced movement, which built my confidence. Additionally, we want to provide our guests the opportunity to improve their quality of life by offering programs that help build a healthy balanced lifestyle. I believe that such support can be of great importance, as the mindfulness treatment I completed early on in my journey significantly improved my mentality when faced with the challenges of life as a chronic patient.
We want patients to feel understood by surrounding them with a professional staff familiar with their disease. The clinic will also provide the opportunity to share experiences with fellow patients. As so little is known about multi-systemic diseases, we learn best from our fellow patients. But what we truly hope is that the clinic will provide each patient with the strength to go on!