It's probably a bit of a strange titel,to tell or not to tell. I have found myself since of late wondering when to tell someone I have MS or not. Depending on the situation and my mood it's not always the right moment. i often find myself saying I have MS without thinking and just blurt it out. The thing is,it's not always the right time. Do we really want to say it when we are at a function or a social event? It kind of ruins the atmosphere I think,but at the same time I sometimes feel the need to say it? It's a really difficult balance to find.
When I got diagnosed I didn't really talk about it,but I guess i did't have too many symptoms then to worry about. Following three years after my diagnosis I started to do my research on my MS and why I had all these symptoms. I didn't have a good neurologist at that time so I was basically doing my own research. This got me talking about my MS non stop and was starting to become obsessed about it. One good result came out of it,and that was damanding to see another neurologist to my doctor.
Once i saw another neurologist and got beter medication I started to let my reseach go. Although the neurologist was okay,he wasn't great. I needed to find a MS specialist and one that spoke English.
I ended up travelling to Australia where I grew up as a child and had hope to find my neurologist there. This turned out to be a huge struggle and on a long waiting list and no time to wait. I ended up in Holland where i was born. I found a great neurologist who was specialised in MS. This settled my mind and worry and gave me a lot of comfort.
But I still found myself talking about my MS? I suppose it's a hard thing to ignore as everyday gives me a reminder that i have MS. The thing is,it's not always something to bring up. Do we say it or shut up? Do we explain why I can't have ice cubes in my drink or do we say "oh i just have brain freeze"??
I have also heard "do you really need to say you have MS"?? It's not a easy decision as some days I do not want to hide my disease as it's already invisible but it kind of puts people in a awkward position. I think the best way is to find the right balance. It's not a easy act to follow and it takes some time to find the right balance for yourself. I believe not what anyone tells you to do,but what is best for you. At the end of the day you are living with the disease.
So to tell or not to tell??........... it's really just how do you feel??? You need to live with it and decide what is best for you :)
Mascha :)
When I got diagnosed I didn't really talk about it,but I guess i did't have too many symptoms then to worry about. Following three years after my diagnosis I started to do my research on my MS and why I had all these symptoms. I didn't have a good neurologist at that time so I was basically doing my own research. This got me talking about my MS non stop and was starting to become obsessed about it. One good result came out of it,and that was damanding to see another neurologist to my doctor.
Once i saw another neurologist and got beter medication I started to let my reseach go. Although the neurologist was okay,he wasn't great. I needed to find a MS specialist and one that spoke English.
I ended up travelling to Australia where I grew up as a child and had hope to find my neurologist there. This turned out to be a huge struggle and on a long waiting list and no time to wait. I ended up in Holland where i was born. I found a great neurologist who was specialised in MS. This settled my mind and worry and gave me a lot of comfort.
But I still found myself talking about my MS? I suppose it's a hard thing to ignore as everyday gives me a reminder that i have MS. The thing is,it's not always something to bring up. Do we say it or shut up? Do we explain why I can't have ice cubes in my drink or do we say "oh i just have brain freeze"??
I have also heard "do you really need to say you have MS"?? It's not a easy decision as some days I do not want to hide my disease as it's already invisible but it kind of puts people in a awkward position. I think the best way is to find the right balance. It's not a easy act to follow and it takes some time to find the right balance for yourself. I believe not what anyone tells you to do,but what is best for you. At the end of the day you are living with the disease.
So to tell or not to tell??........... it's really just how do you feel??? You need to live with it and decide what is best for you :)
Mascha :)
