Thursday, 27 June 2019

Did You See Me? - The Reality Of Chronic Illness As A Parent

Did you see me on holiday with my children recently? Me, the mum with the chronic illnesses, the one who claims to always be in so much pain.

Did you see me dancing in the disco with my children in the evenings?

Did you see us walking hand in hand along the beach, laughing together as we kicked up sand?

Did you see us splashing about in the pool together?

Did you see me walking for hours around Disneyland, riding Its ASmall World over and over, taking the happiest selfies, showing the world via social media how we were #LivingOurBestLives?

Did you assume that, because you saw those things, that my pain isn't real?

That it's exaggerated. That it comes and goes in convenient bursts. That it's something I have control over.

Or that maybe it doesn't exist at all.

Except when it "suits me", of course.

But did you see me later on that night after the disco was done...crying in agony as I lived through the crash that followed my forced merriment and smiles.

Did you see me get out of that pool earlier than I wanted to, having to make yet more excuses and face yet more mum guilt as I bowed out early from yet another family activity because the pain was too much and my body couldn't handle it.

Did you see my face flush with misplaced embarrassment as I took out my walking stick to help me to finish those last few pained steps along the beach?

Did you see me rush off to the bathroom, spending half an hour being physically sick in the comfort of Disney's finest hotels while my children waited for me to return to them. Did you see the sheer pain behind my eyes in those happy selfies with the Princesses? Did you see me sobbing in my hotel room in agony that night as my children slept, wondering how I was going to get through another day of it.

No matter what you think you know about a person living with chronic illnesses and chronic don't know the full extent of it, until it's happening to your body.

Until its your body that feels like its failing you.

Until you're faced with the incredible guilt of having to disappoint your children because your body can't keep up.

Do you know how ridiculous it is, to suggest that living with these conditions would ever "suit" a person?

Do you have any idea of the mental health impact of living with chronic pain on a daily basis, of feeling completely out of control of your own body, of having no control over your weight or level of health, of feeling completely cast out of society because you don't meet the desired level of "health" to be socially acceptable.

Do you know how it feels to have to constantly tell your children that you can't hug them today, because the hugs just hurt too much.

Do you know how endlessly guilt inducing that is?

Do you know how much it plagues my thoughts, that these happy memories I'm trying to make for my children won't be enough...and that they'll only remember the days I couldn't get out of bed, the days I couldn't walk right, the days I cried in pain.

Do you know how it feels to plan the holiday you've always dreamed of, and have to spend time searching for mobility scooters to hire - just incase your body lets you down.

So if you saw me having fun with my children, just remember that what you saw was not a reflection of how present my pain is...but a reflection of how my constant guilt often makes me do things that probably aren't the wisest things to do, in order to make the kinds of memories for my children that I want them to have.

The presence of my smile does not equal the absence of my pain.

I wish that it did.

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