If You Think I'm 'Looking Well'

The thing about fibromyalgia, the thing about so many chronic illnesses, is that they are never just “normal.” Every person is different. Every person’s symptoms are different. And for every person, almost every day can be different too. Whether it’s more fatigue today, or pain in a different place or different intensity. Whether it’s brain fog stopping me from getting out a simple sentence, when yesterday I ranted for an hour. Some days are good, some days are bad, and some days are just days of trying to survive the chronic life and just keep going. Unfortunately, this isn’t something that people tend to understand.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I get what you’re trying to say. I’m glad of the support.

“You’re looking well today!”

“Hey! You don’t have a crutch anymore! I’m glad that you’re doing better!”

“At least you’re not on crutches today!”

“Good to see you working hard!”

To you, these things seem positive, uplifting or encouraging, but sadly, I’m afraid that’s not the case.

What you don’t see is that I’m “looking well” today because I got my first good night’s sleep in two weeks, but I know that tonight I’m going to suffer restlessly once again.

I’m looking well today because I finally forced myself to shower after days of avoiding one, but spending that energy is going to cost me later.

I’m looking well because I decided to put on make-up, to cover up the fact that I looked like a walking corpse in the mirror this morning, completely exhausted, swollen face and my skin a mess from whatever symptom or side-effect – and I didn’t think people would want to see that.

I don’t have my crutches today because I’m fed up of having to try and navigate through rooms and halls and places that are impossible to get through while balancing on a stick, or even two. I’m still in just as much pain as I was before. I just don’t have the energy today to juggle through an inaccessible world.

I’m not using my crutches today because today my arms are just as weak and in just as much agony as my legs are, so I couldn’t hold myself up on them even if I tried.

I’m not using crutches today, even though I’m in agony. Sometimes I’d rather endure pain for a few minutes of walking than being stopped every five minutes when people ask me what’s wrong.

I’m not on crutches today, but I know that I’ll be back on them tomorrow.

I’m working hard today because today is the first day this month I’ve been able to do any work at all.

I’m working hard today because I’ve had to put off my workload for weeks, because I just couldn’t do it, and now I’ve got a million deadlines to fill at once. Even though I still feel as awful as before.

I’m working hard even though I know it will land me in bed for the next week or more. I still need to fulfill my responsibilities. No one understands or accepts it when I can’t, and I don’t want to disappoint everyone again.

People who don’t understand chronic illness don’t understand that some days are good days, and some days are worse than words can even describe. They don’t understand that everything is calculated, planned and organized – just to try and have a smidge of control of my own life. They don’t understand the reasons I do things, or why one day I may act differently from the next. They don’t understand that just because I seem better, or maybe even feel better for a while, that doesn’t mean I am better. They don’t understand that even in the good moments, which may even last for a while, I’m just waiting to crash back down again – because it always happens in the end.

Here’s an idea – ask me how I’m feeling today. Ask me what I need today. Ask me how I’ve been this week.

Please don’t assume that I’m suddenly completely OK.

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Getty image by fotojog