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“So are you okay?” Such a simple question, and yet many of us struggle to answer it when asked by a doctor. Be honest, can you say you are always completely open with your doctor? So rather than discuss what really bothers or worries you, you freak the hell out and start talking about everything else, from a mild sore throat to the weather.
Even when you do buck up the courage to discuss a problem, you may find yourself playing it down for fear of sounding a bit whiny. The freaky sensation in your leg that keeps us awake every single night, for example, becomes “a bit of a tingle”. Or the crushing fatigue that leaves you too exhausted to climb the stairs is reduced to ‘feeling a bit tired’. In one survey, nearly half of people with multiple sclerosis admitted they’d not even bothered reporting relapses to their doctor because they were either too mild or they didn’t think there was anything their doctor could do .
As for embarrassing symptoms like not getting to the toilet in time, peeing when you laugh or the brain fog that made you forget about the parent teacher meeting at your child’s school – forget it. These things are hard enough to discuss with your friends let alone a complete stranger!
But people with MS should feel confident discussing all aspects of their condition – physical and cognitive – with their doctor. And it’s the lesser well-known symptoms of MS, such as depression and forgetfulness, that all too often get overlooked. This “gap” in the conversation is exactly the reason why we are tackling the conversation with, “My Body, My Mind, My Say,” to help people like you with MS speak up and have honest conversations with your doctor.
The thing is, communicating with your doctor can make a real difference in the daily management of your MS and quality of life. Time and time again research shows that patients who play an active role in the management of their MS, fare better than those who simply defer to their doctor or disengage altogether . For example, when people who had previously attended MS self-management programmes in the UK were surveyed about their experience, 64 % said that the program helped them to follow a healthier diet and 53 % said that they learned how to manage fatigue more efficiently. In fact, patient engagement in their own healthcare has been described as the ‘blockbuster drug of the century’ .
To gather real feedback about physical and cognitive symptoms of MS, as well as the issues that often get neglected due to embarrassment or avoidance, such as sex and relationships, we talked to MS bloggers and patient organisations from across Europe. And now, with our campaign, My Body, My Mind, My Say, we want to help empower all people with MS to bring these issues to the table, and look for solutions that can help maintain their health in partnership with their doctor.
Our My Body, My Mind, My Say initiative is aimed at helping YOU to play a more active role in the management of YOUR condition. And this starts with talking to your doctor. Have you recently talked to your doctor about the fact that your appetite isn’t what it used to be? Or that you’re struggling to get the recommended eight hours sleep per night? Or how frustrated you are when those “under the weather” days seem to seriously affect your relationships with your friends?
Yes, it can be hard to articulate some of the symptoms of MS, and the challenges these bring to your daily life – but speaking up is the only way to be heard. So let’s start the conversation right now.
On February 25th we will be hosting a live stream event where we will discuss these issues in more detail with a panel of MS experts across Europe. We will be talking to a neurologist, a neuropsychologist, an MS physiotherapist and a nutritionist in a live debate moderated by two MS bloggers. You will be able to engage in the discussion by tweeting in questions using the hashtag #disruptingMS. Stay tuned to the LLY Twitter Feed and Facebook page for more details.
How do you think doctors could make life easier for people with MS? What do you think is a research priority? And what information would be most helpful when it comes to managing your MS? Tweet us using the hashtag #disruptingMS.
And that’s not all. Over the next few months, we will dedicate some of our blog posts to physical and cognitive health, the topics that are the focus of My Body, My Mind, My Say. Watch out for the first of many interesting blog posts coming up: Vitamins and supplements: Friend or foe?