Dear chronic fatigue syndrome,
I need to get a few things off my chest.
First of all, you need to change your name. You have a confusing name. Life with you involves much more than just feeling tired all the time. Plus, your name doesn’t even have capital letters, but your acronym has extra capital letters: ME/CFS. The name needs to go.
Secondly, my husband and I most definitely have not enjoyed your company over the past two years. You moved in uninvited, for starters. And at a most inopportune time: two weeks before our second baby was born. How rude, taking my mobility away at such a time! Caring for a newborn and toddler is demanding work. Our kids are now 2 and 4, and they don’t know life without you…
Thirdly, I don’t appreciate your invisibility. Sneaky and sly, you evaded medical detection for quite some time. I knew something was wrong, but had no name for my debilitating symptoms. Was it post-natal depression? Was sleep-deprivation making me this way? Terribly confusing. So even though I dislike your name, I’m sort of glad you at least have a name! Now we know how to treat you.
Lastly, you present me with a dilemma: I’m mysteriously contented. More contented now than I remember being pre-illness. Bizarre. Paradoxical. But true… I’m being forced to accept a much simpler life. Unfettered by my old “friends” – busyness, perfectionism and over-achievement – my spirit is thriving.
I hesitate to admit this, for fear that you’ll mistake it as appreciation. I concede I’ve changed for the better during your time with us. My tunnel-visioned, self-sufficient independence has given way to a more community-oriented interdependence. Our children are cared for by a small army – paid and unpaid – of loving people devoted to their well-being. It’s taking a “village” to raise our two kids. By necessity, not by choice (I do miss them). But I’ve been pleasantly surprised! This less mummy-centric model is actually working OK. The kids are resilient and playful and intact. I’m no longer terrified that you’ll destroy them.
Again, please do not misconstrue this as praise, but our marriage has even grown since you moved in. I’ve become less nit-picky and less critical of my husband. You are such a truly awful pest to live with, ME/CFS. I’ve got bigger fish to fry with you around! Your presence has given me a different perspective on my husband. Who cares if he leaves his clothes on the bedroom floor and scrapes the margarine out messily and leaves cupboard doors open? He’s doing all he can to love us, while putting up with you, and that means the world to me. I’m more patient with him now. And kinder. And more trusting. He hasn’t changed; I have – for the better.
Chronic fatigue syndrome, my life is now bare where it used to be blooming. I’ve lost my career. I’ve lost touch with friends. I’ve lost my social life, my independence, my mobility. I’m not the vibrant, active mother I set out to be. My short-term memory is worse than ever. I have become unreliable. (My poor husband!) I struggle to concentrate on simple things. But different parts of me are flourishing now.
Parts that were weak and neglected before have become strengths, even assets. I’m becoming a less self-absorbed, less opinionated person. I’m more grateful, calmer and more gentle. Yes, I still have days where it’s all too sad – the losses still overwhelm me sometimes. But I can’t deny the beauty that’s present in my “new” life.
Is it because of you, or despite you? Or a bit of both? You really are an enigmatic character, chronic fatigue syndrome. Keenly unwanted and truly awful, yet at the same time, you’ve enriched our lives…
I’ve got it! You are a bit like compost. Smelly, disgusting, putrid, rotting, nutrient-rich compost. A reminder that new life can sprout from unpleasant sources. Compost…
That’s your new nickname. I like it better than your real name.