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.

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

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.