All about ME: Invisible Disabilities and Illnesses Week 2016


This photo was taken by our youngest daughter (7 years old) as our eldest (9 years), ran forward for a hug.

In recognition of Invisible Disabilities Week and Invisible Illnesses Week I thought I’d share with you my own story about living with chronic illness. I wrote the following piece in May this year as part of ME Awareness Month here in the UK.

If you’re not sure what ME is, you can read more about it here.

This is the hidden side of ME – and of me.
ME exists: it’s an invisible illness that’s disabling and isolating, no matter how sociable you are or how many friends you have to help when times are tough (and I love you all – thank you for your support).
It’s not just ‘tiredness’ – if only it were that simple! – it’s constant, chronic pain, pea-soup brainfog and nausea, and exhaustion so draining that you can’t lift your toothbrush to your mouth or brush your hair, let alone leave the house.
I’m lucky in that these days I’m no longer bedridden for weeks/ months, nor challenged like some ME sufferers who are so weak they struggle to swallow or speak. My friend’s cousin Sophia was so sick and weak she actually died of ME.
In the past, a glimpse of sunlight through the curtains, and any unexpected noise translated into acute physical pain for me. It was agony, and left me in continuous pain even today – albeit on a lesser scale.
I felt nauseous for two years constant, and my periods stopped. My whole system went into freefall and for a few years it was absolute hell.
Now I’m better ME is still there lurking: I still get knocked sideways by every pathetic cold, am still unable to leave the house every now and then, need a kip most days and sometimes – like last week, above – occasionally lose the use of my legs.
But it’s all relative: I’m not where I once was, the kids are brilliant about it and so is my husband. As you can see!
So please spare a thought for those of us with invisible illnesses: we may look ‘normal’, but for all of us that Disabled Badge is granted for good reason.
We may seem fine and dandy to you, but that’s because we only leave the house when we’re able to – and for some of us that’s for short periods only.
If ever there were a brave face projected at the world, it would be by an ME sufferer determined to make the most of their best days, and trying be as positive as possible during their worst.
Be it Fibromyalgia, MS, Depression or even a disorder like autism or ADHD (two other conditions close to my heart), if you have a friend with an invisible illness you can help by texting when your friend can’t speak, dropping round meals when your friend is unable to cook, and generally remembering they’re there and could do with a loving message offering support – even if you’ve lost touch or haven’t seen them for a good while. Make that *especially* if you haven’t seen them for a while, as there’s probably a good reason for that.
In the meantime, for a deeper understanding of the condition, you can read more about ME here:

Wishing happiness and health to you all,



3 responses to “All about ME: Invisible Disabilities and Illnesses Week 2016

    • Yup, we may all different in our ME/ CFS variations and subsets – and therefore react to conventional and alternative treatments differently – but it’s wonderful to be so united in our support for one another.
      Wishing you happy healing xx

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s