You Look Well
You look well. It’s intended as a compliment but for those suffering with MS it’s can feel like anything but a positive.
No I Don’t
Plug “MS You Look Well” into your favourite search engine and you will get many hits (over two billion when I just tried it!). There are lots of blogs, threads and tweets about unhelpful things people say to MS sufferers. Being told you look well when inside you feel anything but well seems to be a bugbear for many of us.
Of course, nobody says you look well and means it as an insult. It’s usually intended as a compliment. Sometimes it can actually be nice to hear something positive, regardless of how you are feeling inside.
The Invisible Symptoms
So why do we get prickly at something intended as a compliment? The close relative of “you look well” is “you don’t look sick”. I think that suggests that it is the invisible nature of MS that leads people to underestimate what we live with. For many of us, only we know the symptoms and they don’t include turning green or being laid up in bed. They are not visible, and they can be hard to describe. For some it can be crippling fatigue. For some it can be cognitive issues. Others suffer from balance and coordination issues. There are stories of people accused of being drunk when in fact they are having balance problems.
If MS has progressed to a stage where a walking stick, walker or wheelchair is required, that would be a much more visible manifestation of the condition. In such circumstances, I wonder if people would still say we look fine. Would they accept that we have an illness? Perhaps instead they would say “you look terrible”.
More Than Meets the Eye
However, there is more to a chronic illness than meets the eye. We might not look sick but when the symptoms are invisible, how do we help people to understand what we are feeling? I usually described my symptoms as pins and needles in my left leg and back. Everyone has felt pins and needles at some point so they can relate to that. Of course, it’s making people aware that it’s not something that I can just shake off. In the same way fatigue is not the same as being a bit tired. Cognitive fog is not the same as feeling a bit dopey first thing in the morning.
Learning to React
When I was first diagnosed, I found the compliment hard to hear. My internal reaction was “I don’t feel bloody well”. I’d maybe respond, sarcastically saying “yeah but I feel terrible”. Fortunately, I got some good advice from a friend who suffers a variety of allergies and auto-immune conditions. She has been hearing “you look fine” for years and told me what to expect. I should remember that it is intended as a positive. That proved to be sage advice. It helped me understand that it was not a personal slight or diminishing my new condition.
Bearing that in mind, with time I’ve learned to accept it as the compliment it’s intended. I no longer bristle with frustration that people don’t know what MS feels like. The other common statement I hear is “MS? Oh I don’t know much about that”. Thanks, that helps. Or maybe not. I’m happy to explain it, or more accurately explain my experiences of it any time. It’s an odd thing to say. Why does some feel the need to say they don’t know anything about MS? Are they expecting me to test their knowledge? That one bothered me for longer than being told I look well.
Taking the Positives
However I do think there is a danger that reacting too negatively to well-intended comments could lead to an unhappy frame of mind. In the same way that “how are you?” is generally a greeting that isn’t expecting a lengthy response, being told you look well could be considered as a friendly greeting, with some added positive reinforcement. Post diagnosis, I can still exercise and try to look after myself. So if someone thinks that I’m looking well as result, I’m going to accept that with good grace and take it for the compliment it is. That feels like a healthier mindset. But if do look bad, please tell me.