NWO celebrates … World MS (multiple sclerosis) Day

How long have you had MS?

‘I’ve had MS for more than twenty years. I received the diagnosis in December 2002, but I experienced my first clear symptoms back in May 2002 when I received the keys to my new house. Wallpapering is quite a challenge if you’ve lost your sight in one eye. In sum, it took a while before the diagnosis could be established. That was due to the criteria used at the time. Only after a second major flare-up could the symptoms I had be referred to as MS. Before that, my symptoms were diagnosed as psychological – it’s all between the ears – and my symptoms deteriorated further. Fortunately, with the right medication, I was able to recognise myself again in the spring of 2003.’

What exactly is MS?

Mirjam says it is a complex disease that is hard to explain. ‘Multiple sclerosis means the hardening of multiple tissues. Those hardenings are in your brain or in your spinal cord. The immune system attacks substances in those parts and that gives rise to an inflammation. That inflammation causes symptoms because the messages from the brain are no longer correctly transmitted in your body. This can lead to permanent damage (the sclerosis), or things can improve again. Also, your brain can seek a diversion along the damaged part, so that a function (partially) returns again. In short, there is damage as a result of which your brain either does not interpret messages or fails to interpret these correctly. In such cases you can, for example, acquire a sensory impairment: you do not feel part of your body, as if it has become lame, but you can also experience a burning sensation. For everything controlled by the central nervous system can issue erroneous signals. The autonomous nervous system (heartbeat, breathing, et cetera) is not part of this.’

Which symptoms do you have?

‘Every person with MS experiences other problems. So, if you know somebody with MS, then it is unlikely that they have the same symptoms as I do. And even if nobody notices my symptoms, I mainly have pain (often headaches) and little energy. I try to climb the stairs as little as possible, cycling is hard work, I sometimes experience difficulty finding the right words and my vision is not always as sharp as it could be. However, one thing I definitely do, is wear high heels to the office, even though that hurts. And I only wear them if I don’t have to walk far, and they look good on me. After a day at work, I have little energy left at home. If my partner and I go out, for example into town or on a day trip, then I take the wheelchair along. I need to think about everything I do: what do I want to invest my energy in? It could all have been far worse, and so I am relatively well. However, it is no trivial matter and that is a constantly limiting factor. So I really do my best to save my energy as much as possible for the fun things.’

Is MS infectious or hereditary? Can you die from it?

‘The answer to all those questions is no. It is definitely not infectious and the heredity factor is about 3 percent. Only indirect complications can lead to death.’

What sort of work did you do before you became ill and how has the illness influenced your career?

‘I never much enjoyed school and studying. After following a Schoevers secretarial course, I found a job straightaway. When I was working as a secretary, computers were making their debut. I understood computers faster than any of my colleagues and quickly became the expert of the company. Next, I sold computers at an Apple Center. In addition to that, I also worked at the purchasing department, helpdesk and reception. Subsequently, I taught and then I became Head of Training. As a manager, I ran my own department. After some more steps as a database consultant and location manager, I fell ill in 2002, and I couldn’t work for almost a year.’

So how did you become an application manager at NWO?

‘After I received the diagnosis MS, the Employee Insurance Agency (UWV) established that I had a sixty percent occupational disability, and I worked for three days a week. A while later, I was dismissed by my then employer due to a company takeover, and I ended up on unemployment benefits. Despite everything, I wanted to reintegrate and work part-time again. The MS hindered me at my former level and it meant I could no longer work full time. So, I looked for a job where I could have an added value and that I could fulfil as much as possible on my own terms. Of course, I wanted to earn a salary but I also wanted to be among people, make colleagues happy and be appreciated for what I could do. And that is how I, somewhat overqualified, became part of the typing pool of the FOM Foundation (now part of NWO/NWO-I, ed.). In the end, I could also demonstrate my worth within FOM/NWO, and now I am the application manager at I&A. My work includes the application management for the NWO-I website and for several large NWO congresses. I no longer have the ambition to bear overall responsibility or to become a manager, but it is work that suits me well. Fortunately, NWO is aware of my illness, and it is a good and safe employer.’

How do you participate in World MS Day?

‘I no longer do that. But at the start, I benefited a lot from contact with fellow MS sufferers, the patients’ forum on the internet and the information days. In particular, I learned more about the disease. And I also advise everybody in such a situation to do the same. You can find advice, recognise yourself in others, and it is good for your self-esteem. As a volunteer, I also made a contribution to this website. But I stopped because I no longer feel the need for this. I do, however, think it is an important day that deserves to receive ongoing attention and that research into MS must continue. MS is still a big puzzle for science and, unfortunately, there’s no real remedy yet, just palliatives or the alleviation of symptoms.’

Might you benefit from alternative medicine?

‘Anyone who knows me at all will tell you that I have a real disdain for pseudoscience. I put my confidence in double-blind studies. And I don’t trust the tale of somebody who knows somebody else who benefited from a certain substance that is incredibly expensive. Yet, I am a great fan of the placebo effect. If you believe something can help you, then it can really help. But make sure it doesn’t give you a financial or emotional headache.’

Has MS changed you?

‘I’m still the same lively person, only somewhat calmer. I wouldn’t want it any other way. It’s simply how I am. The disease won’t go away, and I’ve come to accept that. Fortunately, I have an outstanding partner in Gerben, who pushes me around in the wheelchair without complaining and always empathises with me and supports me.’

Mirjam’s mottos

My mottos are:

• When all else fails … EAT!
• I like my money where I can see it, hanging in my closet.
• It is always a good time to look fabulous.

So no edifying texts from which you can learn how to cope well with being ill or how you should live with an unpredictable chronic illness. Of course, life is different, but definitely not worse.

More information

Would you like to know more about MS? Then take a look at msweb.nl and don’t forget the annual collection for the Nationaal MS Fonds. And would you like to know more, or do you have any questions for Mirjam? Then don’t hesitate to pop by and talk to her or to reach out and contact her. Mirjam: ‘I definitely don’t treat it as a taboo subject and I don’t have privacy issues should somebody want to talk to me about my illness.’

Text: Mirjam van Ooijen/Melissa Vianen

###