Louise Boyle is a Dublin native, putting down roots in Portlaoise with her family almost 20 years ago. As a person with disabilities, and a mother of a child with a disability, Louise’s interests revolve around advocacy, community and fundraising for various charities
Getting yelled at on a regular basis for parking in a disability parking space has almost become the norm for me, despite having a disability permit.
I walk on, head held high. In reality, I’m squirming, cringing with such monumental embarrassment, all too conscious of the many eyes now on me.
We have all heard about invisible illnesses. We’re asked not to judge others by appearance, but for many it is still not quite hitting home.
Let me try to help with that.
I am a mother. I am a wife. I am a sister, daughter, aunt, work colleague, and friend.
I am someone with an invisible disability.
In fact, I have a variety of chronic illnesses so it’s a lottery on any given day which one affects me more.
Amongst other things, I have advanced osteoarthritis in most of my joints, spinal stenosis and Ehlers Danlos Syndrome (EDS).
EDS is a genetic connective tissue disorder that causes a multitude of symptoms and secondary conditions, most notably, joints to be loose, often dislocating and inevitably leaves me in constant pain.
I am 37. I look like a “normal” 37 year old. But I’m not.
For as long as I can remember life has been excruciatingly painful for me, even as a child.
As I wake every morning, my first thoughts are “Oh sweet Jesus, I can’t move!” “Oh Christ, the pain!” “Oh sweet mother of pearl let me die now!!” Everything hurts.
Every.
Single.
Part of me.
Each breath is torture; like my ribs are in a vice, squeezing the very life from me. Every joint and muscle are so incredibly stiff. I look like C3PO getting out of bed taking my first morning steps!
Living with chronic pain means you need to prioritise. The exhaustion and pain determines everything for you. At times, it’s choosing between A) having a shower or B) feeding the kids. My body cannot take both. And I think it’s a requirement to feed your kids. Like, EVERY DAY!
My 15-year-old daughter also has EDS. We can, through the pain, have a great laugh with one another. While shuffling around the house, we would giggle at how stupid we look, but as we laugh, it just hurts more.
For those of you who have any chronic illness, you’ll understand the importance of humour in our situations. It’s absolutely ESSENTIAL.
Without it, we would be just a sobbing heap of self-fuelled pity. It may be dark, gallows humour, but humour nonetheless. If we can take the mickey out of each other and ourselves, then other people’s comments won’t hurt as much
We are FUBARed. Cripples. Old women. Quasimodo. A crock.
For the PC brigade, fear not, you lovely souls. It’s in the privacy of our own home that we call each other those things. We tease and insult each other about who is more crippled than the other but we do NOT refer to others like that!
It’s simply our way of dealing with the hand that we have been dealt.
The take away from all this?
While the well-meaning, good hearted people out there might THINK they’re being good citizens giving out to people for parking in disability parking spots, just remember that there are those like my daughter and I.
We go through hell every single day but still look “normal”. Maybe ask first if they have a valid disability parking disc before jumping to conclusions.
Sometimes the do-gooding causes more harm than good.
Some days I can conquer the world. Today, I got dressed!!
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