Until about eleven years ago, Marieke Suur (54) was a busy person who always kept going. But this changes drastically when she has less and less energy and eventually has no choice but to spend her days in bed. It takes a long time before Marieke receives the correct diagnosis: she suffers from ME/CFS. ‘My body continued to break down.’
Marieke and her husband Michiel have three daughters and live in a small but lively village in the province of Utrecht. “I have always been someone who was busy. I enjoyed working in disability care. But at a certain point I noticed that I needed more and more time to recover after doing something in the house, the garden or at work. There were days when I worked hard because that was necessary, but the days after that I could do little. My body couldn’t move forward. As a result, I started going to bed earlier and earlier. At one point I was already in bed at seven o’clock. No matter how hard I tried to stay up, I couldn’t. I was exhausted and couldn’t even sit down anymore.”
More than a burnout
At first it seems that Marieke has a burnout. She stays at home for a few months and slowly improves a bit, but things still go wrong again. “When I started building up again, it was very difficult. My body did not recover. It is becoming increasingly clear to Marieke that there is more going on than a burnout. “I started reading about burnout and about ME/CFS, a disease that is also popularly known as ‘fatigue disease’, although that name is completely inadequate. I increasingly recognized myself in the descriptions of ME/CFS.”
ME/CFS: a chronic multisystem disease
Marieke tries everything to feel better. “I started with a Start to Run course, then did physio sports under supervision and I walked miles every day because exercise is so healthy. But nothing helped.” It was not until 2020 that Marieke was diagnosed with ME/CFS: a serious and complex chronic multisystem disease, which means, among other things, that many systems in the body do not work properly. Extreme fatigue is just one of the symptoms that seriously limit the quality of life. The complaints worsen after physical, mental or emotional exertion; even if that effort is very light. The main symptom of ME/CFS is that the body cannot recover from it. “The day I heard that I was very ill, a lot changed for me. Finally, people really listened to me and my body. Finally, I stopped feeling guilty because I thought I wasn’t trying hard enough to get better. From that moment on I started living according to what my body can handle. As a result, and through medication, an attempt is made to get the complaints somewhat under control. There is currently no treatment for this disease.”
Separate from everyone
Unfortunately, Marieke’s complaints continue to worsen and she is now in bed 24/7. “The main problems I experience are barely being able to sit or stand up straight. Within fifteen minutes of sitting I feel dizzy and my heart is racing. I feel nauseous, my ears start ringing and my head seems to explode. I can also tolerate little to no sounds. I’m upstairs in my room, separate from everyone. I only do normal things like showering and washing my hair when I feel well enough, which in practice is once every six to eight weeks.”
Michiel comes by once, sometimes twice a day to chat for a few minutes
Michiel comes by once, sometimes twice a day to talk to Marieke for a few minutes. “My illness also has a major impact on him. Our relationship has changed drastically now that Michiel, as an informal caregiver, in addition to his full-time job, also has to take care of me, cook food, maintain the garden and be 200 percent ready for our children. The biggest change in our relationship is that we can’t share much with each other: our thoughts and what we are doing, what makes us happy and what our dreams and fears are. How we could previously be there for each other is over and that makes us sad. We miss being really connected, but we still experience that we are very close to each other. Michiel and I often need half a word to understand each other and learn new ways to experience a relationship that – in addition to loss – can still be valuable for both. Despite our sadness, we both experience this as a blessing from God.”
Contact with Marieke’s children has also changed. “Every now and then my youngest daughter, who still lives at home, comes to talk about her day. I don’t see my other daughters much and it’s almost impossible to call them. There is no such thing as family life for me anymore.”
Unconditional support
Marieke experiences a lot of support from her family, friends and people from her church. “They have always believed that I am really ill instead of pretending to be. I sometimes read of people with ME/CFS who are not taken seriously even by their own family. It is so important to notice that you are not alone in this disease and that you still matter, even if you can no longer participate in society. What is also very important, but what many people forget, is that it is not only the sick person who is having a hard time. The family members of someone who is chronically ill are also in a difficult situation. I am very grateful for the cards and flowers I receive, but sometimes it feels like Michiel is forgotten. People often ask him how I am doing, but not how he himself is doing. What helps us all is when people ask if they can do something for us. Even though nothing may be needed at such a moment, knowing that you can always turn to the other person lowers the threshold for asking for help.”
I have never been able to visit my eldest daughters
It hurts Marieke that she can no longer be the mother and woman she was before. “Our two eldest children have left home and live together in Utrecht. I couldn’t help with moving. I’ve never even been able to visit them. When my children are having a hard time, I can’t go to them and I can’t celebrate birthdays either. I can no longer work in the garden with Michiel or just enjoy a sunset in silence. I see how heavily the responsibility of this life now weighs on him. I would really like to take some of the weight off his shoulders.”
Rich life
Marieke’s life has come to a standstill. Yet, thanks to her faith in God, she experiences that her life is no less rich than before. “It’s difficult to explain, but God is so much more present in my life than before I got sick. Because I have learned to listen better to His voice, an open connection has been created between God and my heart. A Psalm in the Bible, Psalm 139, gives words to this presence of God in my life, especially from verses 5 and 6:
“You close in on me from behind and before,
You lay Your hand on me.
To know this – it is too wonderful for me,
too high, I can’t reach it.”
By now spending the days in our garden gazebo, I feel as if I have gotten life back a bit
“What is also very different is that I can now enjoy very small things. The contacts via WhatsApp, the cards, flowers and other sweet gifts I receive bring lightness to my life. But the most beautiful gift of recent years is the opportunity to spend the days and nights in our garden gazebo in the warmer seasons. We came up with this last year and a world opened up for me. I’m lying there again now: surrounded by the garden with its many flowers, trees, insects, birds, hedgehogs and everything nature has to offer. I feel like I’ve gotten my life back a little bit and I’m so grateful that this opportunity is there for me!”
Marieke’s garden gazebo. Credits: Private.
Life is allowed now and here
Marieke lives by the hour. “Otherwise this life would pass me by. I look forward with longing to life with and with God in heaven. That I may and can be a human being as God intended me to be. And when I think about the fact that I will be able to walk among the flowers and trees again and fully enjoy God’s creation, I can hardly wait until the time comes. But maybe that can be done earlier. A lot of research is currently being done into ME/CFS. Who knows, maybe in the future it will become clear what causes this disease and a medicine or treatment will be available that will allow improvement or perhaps even a cure. What I have learned in recent years and would like to pass on to others is that life is not something that will ever come again and that we work hard for now. Life is allowed now and here.”
On her Facebook page Marieke shares more about her life with ME/CFS.
