A Guest Blog Post from Alice Thomas
In the early days of my MS I regularly heard ‘But, you look so good.’ While I have always been happy to have my good looks admired, rather than feeling like a true compliment, this statement often came across as one of disbelief that there could possibly be anything wrong with me.
I have even been skeptically asked ‘Are they sure you have MS? You don’t look sick.’ To which I am tempted to reply ‘You don’t look ignorant’. Because the question is inherently impudent and compels us to provide proof we actually have a disease. As patients, we don’t want pity but we do wish to be understood and we shouldn’t have to explain. So, what’s the answer?
One of the barriers to negating this confusion is that invisible symptoms can be difficult and even socially unacceptable to talk about. Amongst the many aspects of MS that aren’t obvious to the casual observer, bladder and bowel dysfunction are some of the most distressing. During my own looking so good days, this may have been the most troubling of my symptoms. I didn’t understand it so how could I talk about it and furthermore, why would I want to? It didn’t seem right to answer the old ‘But, you look so good?’ raised eyebrow with the truth that actually I was up all night doing laundry and crying because I’d peed the bed.
Adding to the frustration and confusion that looking good doesn’t necessarily equal feeling good, is that we as patients already question this ourselves and sometimes we are the most unforgiving accusers of all. We too can’t clearly see our own fatigue, nerve pain, numbness, muscle weakness or heat sensitivity. Consequently, we repeatedly set ourselves up for failure by not recognizing or respecting these unseen forces and then feel angry and defeated when we can’t accomplish what we’ve set out to do. We are the unwilling soldiers in our bodies’ civil war and it is a physical battle but also an emotional one. The physical struggle might be about the strength of our legs on any given day but the mental one is often an argument to simply will ourselves to do that which, based on how we look, we think we should be able. What we need to tell ourselves is the same thing we need to hear from others. MS is real. MS is hard.
The answer to the dreaded ‘looking good’ statement isn’t to defensively list off every manifestation of the nasty disease that exists within us. You don’t owe anyone an explanation of something as intimate as your health. Nor should you have to prove your condition. But the question isn’t going away. Determining what is caring inquiry and what is idle curiosity can inform your response in these interactions. I’ve often found myself uncomfortably blurting out more than I wanted with someone who didn’t really care anyway. Rather than referencing my latest MRI, I’ve learned to point to some resources. Now when someone remarks on my striking countenance I say ‘Thanks, I inherited my mother’s flawless skin. MS is a complicated illness. If you want to know more, may I suggest checking out the MS Society website?’.
We are all curious from time to time. Let us act out of compassion and before we glibly assess the state of someone else’s health, of which we actually know nothing, pause a moment and instead of saying ‘but, you don’t look sick’ admit that we don’t really know much about the problem and ask how we could find out more.