Describing MS and its Symptoms
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If we stumble, fall and snap a bone, we are obviously ‘broken’ and need to be fixed by our doctors and often require assistance from our family and friends. No one questions if we need help and medical care.

When we get sick and have an elevated temperature, it’s easy for others to see the proof that we are ill, and we might need help from our doctors and an extra dose of compassion and help from our family and friends. It’s obvious because not only do we  say “I’m not well,” there is physical evidence such as x-rays  or a thermometer reading.  In these circumstances, everyone believes us when we say we are sick – they don’t even have to see us in person to get their proof.  They will take our word for it via a phone call or someone else sharing the news.

When people don’t believe you

So why isn’t it that easy for so many people to get others to believe they are sick with their Multiple Sclerosis?  We hear others talking about how their doctors, friends and even family don’t quite want to believe they are really sick.  I’ve read of people being chided and even ridiculed that they were using their MS as an excuse to not be active, to not clean their house,  not go to work, etc. etc. etc…..

For years, long before I was diagnosed with MS,  I stated if someone says they are in pain, they have to be believed.  Just because we can’t see pain doesn’t make it unreal, and I always want to at least begin by setting aside any doubt and believing the other person.  What is it about MS and its symptoms that are unbelievable?

When people say, “but you look so good”

With so many of the symptoms of MS  invisible to others, the larger question remains – how do we break out of the ‘but you look so good’ syndrome that can trap us from being taken seriously and believable. Patient reported outcomes (PROs) are gaining attention in the MS medical community as a legitimate tool to measure how we are really doing day-to-day.   These PROs are the way our invisible symptoms can be better understood, and this leaves us with a new challenge – how do we state PROs in a way that clinicians and researchers  will clearly understand.


For example:

How do we paint a picture of fatigue? At your next appointment, when you are asked ‘do you have fatigue?’, don’t just answer yes (if fatigue is a problem for you). Tell them how you are fatigued, such as ‘fixing meals for my family has become almost impossible because it takes so much out of me.’  Or if you have had to alter your routine because of the fatigue, give the details.

What makes our balance problems so difficult to explain?  Don’t just answer you are off balance – again give examples such as “ I avoid high places because I feel as if I will fall over the edge. “ Or you’ve stopped picking up your small children for fear of falling with them. These are real examples that make it easier for others to understand what we experience.

Because we ‘look so good ‘ we must find the words to explain the symptoms that interfere with our lives the most.  If we get better at describing how MS is messing with us by using more descriptive Patient Reported Outcomes  to our doctors, it might help us  to explain our problems in greater detail to our family and friends. Do you have ways to describe your MS symptoms that help others visualize what you go through?  Please share them –we need all the words we can gather to describe our problems.

Wishing you well,

Laura

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