5 minutes, 40 seconds
Quality of life is the phrase on everyone’s lips. Everyone strives for it. Generally speaking, it’s everything coming together that means people can lead a good life. Being happy and satisfied. Things like eating right, having a nice home, money for everything that’s good for you. Everyone has their own priorities, but there’s one factor that’s important for everyone: health.
However, being healthy isn’t always about good health. For me, someone who lives with MS, lots of things that ‘healthy’ people associate with a good quality of life have become rather unimportant over the years. For example, being able to take part in absolutely everything that looks fun. Not anymore. Often enough, I must decline. Because of my MS. Or, chasing after every new trend that comes along, I have to think about those things carefully.
Facing up to the disease is a daily challenge. Sometimes more, sometimes less. The visible symptoms, like having trouble walking, as well as the invisible ones, like sensory disturbances and fatigue, all influence my quality of life. MS shifts your priorities and perspectives. It means living with a lot of compromises. Sometimes far too many, and who wants that?
There are plenty of factors that negatively impact our lives when it comes to MS. Therapies, but also intimate issues, like sexual dysfunction or bladder problems. It’s no fun having to look for the nearest toilet before you can start to feel safe and enjoy yourself.
That’s why it’s important to seek open dialogue with your doctor. Unfortunately, that’s not always easy. We define quality of life differently. In the world of medicine, they look at it from a somewhat technical, economical perspective, with statistics and less personal insight from the perspective of those affected. This distinction often leads to a breakdown in communications with doctors. But there’s also the issue of time. In a realistic appointment that’s 10 to 20 minutes long, you just can’t cover everything. There are tests your doctor wants and needs to do, and you must be careful not to leave the important issues unresolved before heading home.
Constructive dialogue with your doctor can have a positive effect on your quality of life. What’s important is that we help those affected and take action. One factor that helps is to put your doctor’s understanding of your MS at the top of their list. I note down the important things like new symptoms on my Evernote list. Evernote is an app on my phone that helps me sort and organise things. It’s important for the doctor and for me. It’s information that shouldn’t be missed out and keeps track of the progress of my MS.
When I see my doctor, I have no problem interrupting his routine. Friendly banter, because that’s what it is, is overrated. I get straight to the point – life is short. Those of us who live with MS have the right to be heard. It helps us achieve and preserve the right to a good quality of life. Especially since living with MS requires more compromises than anybody wants to make.
That’s why it’s so important to deal with the issues head on. These are doctor’s appointments and it’s the doctor’s duty to keep us informed. Quite understandably.
However, it’s also down to us to take the initiative and actively ask to talk about these things. Because MS is not routine, it’s something specific and different for every single affected individual.
The slogan of World MS Day is: #BringingUsCloser.
And that’s exactly what it’s all about. Getting closer to one another and addressing what’s important to us. Discussions bring understanding, knowledge and, in the end, clarity on whether we need to be for or against something.
In this case, and in every case, for good quality of life. And surely that’s a great goal to have, isn’t it?
© Genzyme Europe B.V.
Date of approval: May 2018
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