Telling Me I 'Look Healthy' Is Hurtful, Not Encouraging

My illnesses are invisible. If you look closely you may see that my behavior is a bit off and something isn’t right, but for the most time my Ehlers-Danlos syndrome, fibromyalgia, allodynia and neurapraxia are hidden from the world.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The most common thing people say to me when I tell them my story is “but you look so healthy.”

In context, I used to be carrying a bit of excess weight but I have been having a series of problems with my jaw over the past year. I have been consuming either liquids or incredibly soft food for just over six months now and the thought of eating like this anymore makes me sick. So I stopped eating. I simply eat to survive, and hence, I have lost a lot of weight.

But that does not mean I’m healthy. And telling me I look healthy just signifies to me that you really don’t understand when I tell you that I’m not.

You see, this is the hardest part about an invisible illness – everyone doubting your experiences. I understand that it may be hard to believe that I can appear alright and yet be talking to you with a dislocated shoulder and pain that might send most people to the ER.

I know you mean well by saying it, and part of me loves the fact that I do appear so normal, because that’s how I want to look to most people. But if I tell you, it’s because I want to let you into my world and I want you to try to understand. While I’m sure you don’t mean it this way, when you tell me I look healthy you are belittling my struggling. I told you because I trust you, so I ask you to please trust me back.

What you need to understand is that I only let the outside world see the parts of me I want them to see. You don’t see me when I wake up first thing in the morning (if I’ve been lucky enough to get any sleep), unable to move or feel my arm because I slept on a dislocated shoulder and pinched my nerves. You don’t see me getting ready two hours before an event so that I can rest between getting ready and going out because I don’t have the energy to do both without lying down in the middle. You don’t see me when I have to get my mum to pick me up because I physically can’t concentrate enough to get myself home due to the brain fog caused by fibromyalgia. You don’t see me admitting myself into the hospital so that I can be on a morphine drip to relieve enough pain to allow me to sleep. You don’t see me screaming and crying when I’m not sure how much longer I can keep going.

And that isn’t your fault. I only let you see me when I have the energy to leave the house and when my pain levels are low enough to allow me to concentrate enough to engage in conversation. When you see me, I will have make-up on to cover the bags under my eyes from my tears and lack of sleep. Any braces I have on will be invisible to you, except for the occasional sling. Any medication I take I will take away from you. I do this so that you don’t feel uncomfortable and start treating me like I’m sick, because when you are chronically ill, the last thing you need is to be pitied.

I choose not to show you that part of me, but it does not mean that it doesn’t exist. That doesn’t mean I am healthy. I smile regardless of pain and I do things you may think ridiculous for someone like me, but it doesn’t mean that my pain isn’t real. The reality of an invisible chronic illness is that it demands to be hidden, because disguising it is the only choice you have.

I shouldn’t have to justify myself to you. I shouldn’t have to convince you of my reality. I don’t expect you to always be able to understand, but I do ask that when I let you into my world, you don’t doubt me.

Instead, just let me know you’re there. That means more to me than you will ever know.

Thinkstock photo via Tinatin1.