But You Don’t Look Sick

We have all been there, not just people with MS, but anyone with an invisible illness.

“But you don’t look sick!” Perhaps THE pet peeve of everyone falling in that category!

First appearances always count, and some people without an invisible illness or disability have a preconceived idea in their head of what you should look like; what your illness should be like and how you should respond to these combined factors. Then I think if people were to apply a similar line of thinking to people with cancer, would they judge in the same way?

In the past, I’ve written many times about not looking sick and the drama it brings, and please do believe me, drama there is. At some stage the tension grew to such an extent where the hurt caused was more painful than some of my worst trigeminal pains. Of course, on the other side of the scale, many people who genuinely care about you, say that you look fantastic, and you can trust them never to add the unspoken “Oh, you most certainly don’t look sick to me!”

The histrionics begins when people do exclaim those dreaded words. You can almost see negative words flowing out of their mouth and mind as if they always expect you not to look anything but sick. As if they need to see you struggle and look miserable to believe you’re ill. Dare to laugh and you must be as fit as a fiddle because surely, no laughing, decent-looking person can be that happy and sick!

A while ago I came across an image that said: “Any idiot can fake an illness, but it takes real talent to fake being fine when you feel like hell inside!” It made me think of my late stepdad who used to say I was superb in hiding MS. As a result, there are days where my illness is not talked about at all. Sure, the MS is present, I feel it, it sometimes keeps me awake at night and I see the consequences of it in a nightstand filled to the brim with medicines. I just refuse to give MS more time than it deserves.

It’s easy for others to judge you for five seconds when you are living with a 24-hour reality that looks entirely different. I have been cheeky in the past by asking “Well, what does being sick look like, then? Pray, do tell because I want to make sure I get it right next time” but I was met with wry smiles. My inner voice now says, “Oh, you may not see it, but I sure feel it, so if you want to exchange bodies for a while, I’m all for it! You can feel how everything below my skin operates and abuses my strength, and I bet you will not doubt me ever again!” 

At some stage in your life, though, you think, “If I look ill, so be it.” I have black circles under my eyes of fatigue. Many times I wear fake tan to hide my pale skin and the circles, but on other days I simply don’t feel like smothering myself with chemicals. People stare at me when I don’t – that is their prerogative – and I have been called names by teenagers in my housing estate because of it. That, is also their prerogative.

At first, hearing remarks on something I cannot always hide, hurt. Then I remember that I am not obligated to hide my illness from anyone, especially when it is to make people feel more at ease with their negative thoughts about me. I take the high road, and realise that people can only judge you from their own small-minded perception, and not from inside our body. 

At some stage, people need to understand that bad words and attitudes can hurt more than physical pain can. If you have been following some of my posts, you might have read that I live with excruciating facial pain. Despite this, I have been accused of faking my illness and have been told to stop wallowing in self-pity for being unable to attend certain events. “Oh yes, as if I truly choose or want to take a lot of medicines and lie on the couch in pain all day!”

When people only give you that much credit, it speaks volumes about their stance in life and says a lot more about them than it says about you. Anyone can get ill, anyone can end up in a bad way at the very last minute, so don’t kick someone who is already down. It is unforgiving, disrespectful and shows a lack of empathy.

In the end, you could of course always say, “Of course I don’t look sick, I am so tired every day because of trying to look my very best!”

Further reading

If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter.