Why You Should Stop Telling Me I Look 'Too Well' To Have MS

While you might see someone with multiple sclerosis using a walking stick or wheelchair, generally we look the same as everybody else. There is no ‘normal’ example of what MS looks like.

Last year I was 21-years-old and working in Paris when I was hit with various weird symptoms. I woke up one day with a lack of coordination, difficulty walking and numbness on the left side of my body. After numerous tests, scans and appointments, I was diagnosed with the relapsing form of multiple sclerosis.

MS is a chronic condition that affects the nerves. The condition makes it harder to do everyday things, like walk, talk, eat and think, but it’s unpredictable and different for everyone. In other words there is no ‘normal’ example of what MS looks like and this, of course, can be confusing.

After the diagnosis I spent a week back at home feeling very sorry for myself and only speaking to those closest to me. Eventually though I decided the only way to get through it would be by turning my diagnosis into a positive. I started looking on MS websites to find things I could take part in or people to talk to. I needed something to focus on. I found an MS Society skydive and signed up.

I had already told my closest friends and family my MS news but had really struggled to find the words. So this is how everyone else found out – though my JustGiving page. I received an enormous amount of support during what was a very dark time. Plus I ended up raising just under £4,000 for the MS Society. It was the best thing I have ever done, but I began to realise a few things about how people might see me now.

Many were shocked and made comments like “you look so well.” Now of course this was lovely to hear, but it was clear they had expected me to look very different. In actual fact, I looked – and still look – exactly the same. Even now, people are always shocked when I tell them I have MS, because it hides itself so well.

This World MS Day, the focus is on understanding invisible symptoms. Because while you might see someone with MS using a walking stick or wheelchair, generally we look the same as everybody else! MS comes in different shapes and sizes, stages and forms. For some it happens quickly, for others it develops over time. In any case, every MS journey is unique. A common misconception is that everyone with MS won’t be able-bodied. Either that, or people assume you’re fine because you’re not in a wheelchair.

When you look healthy on the outside, one of the greatest challenges is explaining to others you actually feel ill, exhausted, or are in pain. If people can’t see you struggling, they can’t imagine something is wrong. Unfortunately, people tend to judge others by what they see alone and decide whether they are capable or incapable based on that. It can therefore be difficult to understand someone who looks fine, but acts incapable.

The life of someone suffering an invisible illness can be filled with insensitive encounters. Comments like why are they absent so often, why they are unavailable for social activities, why they often seem withdrawn or down, or why they lay in bed all day. As the person trying to explain, you may be met with the infuriating response of ‘but you don’t look ill!’ This is, perhaps, one of the most frustrating things to hear for people like me with invisible illnesses.

My blog butyoudontlookill.com discusses topics around invisible illnesses and chronic conditions with a particular emphasis on MS. When I was first diagnosed I found it difficult to find people who I could relate to. My hope is that my blog will not only help people with MS but people with all sorts of invisible illnesses.

Spreading awareness is the only way to create a more accepting, understanding world. We need to make the invisible, visible. The more awareness and understanding there is of MS and other invisible illnesses, the easier it will make life for me and so many others.

Amy Thompson runs butyoudontlookill.com. For more information about MS visit mssociety.org.uk