What the World Doesn't See on the 'Good Days' of My Illness


How do I seem to a world which only sees my good days? A world that doesn’t see the tears, the pain and the fear. A world that is too bright, too loud and too fast. A world which moves onwards and I stand, unable to keep up — slipping further behind and further away.

How do I seem to a world that only sees the facade? The plastered-on smile — pulled so tight it feels like it’s going to crack. The attempt to carry on as normal, whatever “normal” is. The pretense, the act, the lie.

How do I seem to a world that doesn’t see the effort everything costs? Even sitting still and silent slowly draining what little energy I have. The temptation to give up and hide away which only gets stronger.

How do I seem to a world that can’t see the doubt and the fear and the hopelessness? A world that judges, harshly and is filled with hypocrisy a world that just doesn’t want to know. A world that doesn’t seem to care.

How do I seem to a world that can’t comprehend? Or just won’t understand? How do I respond to “It’s all in your head” or “If you just try harder” or “I know someone with fibromyalgia and they still do XYZ.” How I am suppose to feel? How am I allowed to feel?

How do I seem to a world that doesn’t want to see the anger and the self-loathing? The voice that whispers “Maybe you deserve to feel like this?” The anger at the lack of reason why?

How do I seem to a world when I have to escape, from the noise, the light, the movement to hide away? Am I shy or rude? What explanation do I give? Does the struggle show? Am I hiding it as well as I think?

How do I seem to a world that I only venture out in to because of my daughter? A world I want to forget because it reminds me of better days? Where do those reserves come from that mean I can do things for my daughter, things I can’t do for myself? How far would I slip if not for her? What do I do when those reserves are all gone?

How do I seem to a world that doesn’t see the sofa-ridden days, the bedridden days, the laying-on-the-floor days… curled-up-in-a-ball days? The crawling out of bed, the sleepless nights, the zombie-like days.

How do I seem to a world that only sees my good days?

How will I seem to a world when there are no more good days?

Follow this journey on Odd Socks and Lollipops.


Find this story helpful? Share it with someone you care about.


Related to Fibromyalgia

When My Fibromyalgia Means My Kids Have to Grow Up Faster

“Amma, why don’t you come to all my baseball games?” “Amma, why do you sometimes stay back in the room when we are on vacation?” “Amma, why did you sit out the hike after our kayaking trip?” These are some of the many varied but similar themed questions my boys ask me. My answer is [...]
woman sitting on bench rubbing head

How I Explain Fibromyalgia to People Who Don't Get Why I'm Tired All the Time

Christmas lights in July… I can hear you thinking, What is she talking about? It’s not even Halloween yet and she is already thinking of Christmas. Well I am not thinking of Christmas, but the aches and pains that make me feel like someone has turned on the twinkly lights in my body. I have always used the [...]
Young couple hugging on sofa in front of fireplace at home, rear view

20 (Gentle) Date Ideas for People With Chronic Illness

Chronic fatigue, fibromyalgia or any invisible illness definitely strains relationships, so it is important to keep the flame alive. Communication is essential between couples. Often we do not appreciate what a good talk to the one we love will achieve. If you met your partner before your diagnosis you may go through a period of bereavement. You [...]
Friends in casual outfit enjoying sunday lunch

What I Would Offer at My Dream 'Spoonie-Friendly' Restaurant

This week I went out for a meal for my son as it was his special birthday. The night was perfect. The restaurant is a simple local family favorite for soirees of this sort. Before I was ill I would just select a restaurant for their food and service. I now need so much more [...]