If you are reading this and would like to get in touch with me, perhaps to ask something or just to talk or write a little, you are warmly welcome to email me at: .
My first instinct was to tell only the people closest to me. I absolutely did not want “everyone” to know what I had been affected by. Under no circumstances did I want people to feel sorry for me and my family, or for me to be treated differently because of it. I just wanted to be myself and the person I had always been. I just wanted to continue my ordinary life, with everything that involved. Nor did I want others to think that they needed to adapt or take special consideration because of me. No, everything should simply continue at its usual pace, I thought. As long as it did not show or become visible, things could remain exactly as they had always been.
And that is how it turned out. I chose to tell those closest to me, and a few others who came along with that. For example, the people I told may have felt a need to tell their best friend or partner, and so on. This was my choice, and what felt best for me at that moment. Some people are completely open from the start when they go through something, while others want to keep it to themselves for a while. It is completely okay to do exactly what you want and feel is right. Only you decide how you want it to be.
It is not that I am ashamed of my diagnosis or that I deny it, but there is something about keeping one foot in the time before the diagnosis. As if holding on to something safe, something familiar. I had a feeling that I would have to rebuild my identity, as if I was no longer myself but became “the one with Parkinson’s”. I wanted to continue being the happy, outgoing and social person I had always been seen as.
Then it occurred to me: who or what is stopping me from being the happy, outgoing and social person I have been, also in the future? Well, only myself. No one else changes me. I am the one who is me. I am still me, with or without a diagnosis. That was a comforting realisation.
I myself see people who are open about how they feel and who share their difficulties as strong people. I often think it gives people more depth and can even make them a little more interesting. So I can hope that this is how people will perceive me too when they know about my situation.
This particular diagnosis, Parkinson’s disease, is surrounded by quite a lot of prejudice and lack of knowledge. Most people picture an elderly person, usually a man, who is hunched over, shaking and shuffling along. And then there is me, the complete opposite: a woman around 40 who is fairly youthful, at least I like to think so, with good posture and a brisk walk. So on the one hand, I want to shout out to everyone that I have Parkinson’s, just to show that it does not have to look like what I described above. That you can actually look completely normal and live without major difficulties. If you have good treatment, people often cannot see that you have Parkinson’s, at least not for many years.
Here I want to add that I am fully aware that some people have major difficulties and feel very unwell in different ways because of their diagnosis, even at the beginning. But I am writing from my own experience. When the media presents different stories and life stories, they are often about the most difficult and tragic cases. I think it is important also to show the side of those affected who live a fairly uncomplicated and good life with Parkinson’s. This is important in order to give hope to those who receive the diagnosis, to show that it does not have to become completely dark, but that life can still be quite okay. I want to spread hope and joy in life, especially to those of us who are younger when we are affected.
Now, after four years with the diagnosis, I have begun to open up and tell a few more people now and then when the moment has felt right. By the right moment, I mean when I know that it shows that something is “not as usual”, for example if I am extra hypermobile one day at work. Then I may be perceived as nervous or stressed. It feels as though the body is sending the wrong signals; they do not match how I feel. I have never been a particularly nervous or insecure person, so then it has felt good to explain why I have those symptoms. Then I can settle into being myself, and know that no one is judging me based on my body language.
When I tell someone, I like it when they show interest in the diagnosis and ask how it works. I do not like it when people “tilt their head” and feel sorry for me. That creates the wrong kind of energy. Fortunately, almost everyone has received it in quite a neutral way and has not made a big deal of it. They have asked what Parkinson’s means and how it affects me, more or less.
Overall, I think it feels good when people ask about Parkinson’s, because in some way I like sharing knowledge about it. I like spreading current knowledge about the diagnosis. Things are quite different now compared with before.
Today is the day before Midsummer Eve, and we are preparing for tomorrow. Flowers for wreaths need to be bought, food needs to be bought and prepared, and I need to tidy and make the conservatory nice, where we will be spending time. I have decided not to stress. Whatever gets done gets done, and the rest will work itself out. I hope the weather will be as beautiful as it was last year. The main thing is to have good company — then it cannot go wrong.
You are warmly welcome to contact me.
Wishing you a very happy Midsummer!
/Maria