Our voices are much stronger when we shout together

Lately I have been able to channel my energy into my passion – an organization I am developing here in Ottawa, Canada – that allows me to put my advocacy into real action. While still in the early stages, the organization will turn into a pain center devoted to women with unresolved chronic pain, and will provide non-clinical means of mitigating pain in parallel to clinical treatments.  You can read more about it here at femade.ca (please be kind, it’s still early days!)

This is what gets me up in the morning, and what keeps me up at night. I am constantly doing research in medical journals to understand the gender-bias outcomes of pain treatment, and the gaps in medicine for diseases like fibromyalgia, a seemingly common disease. Having a science background and working in the healthcare field helps tremendously. And while the data is compelling, it’s not compassionate. So I decided, the best data I can acquire is through real people; real women suffering everyday.

Last month I revealed a pain survey and opened it up to women around the world to participate in sharing their pain journey. Within the first week I obtained 200 participants and the responses were both informative and emotional. New responses continue to flow in, and with every one it brings tears to my eyes. The message that I learned through all of this is that

our voices are much stronger when we shout together

Last week, I opened up a simple question on social media “When people ask you what the pain feels like, what do you say?”. 150 responses later, here are some of the ones that stood out (beware, some responses are graphic):

Endometriosis

  •  It’s like someone is taking a fork and scraping you from inside.
  • You know how you squeeze/wring water out of a sponge? It feels like someone is doing that to my abdomen…
  • Someone cutting my uterus out with a rusty spoon and no anaesthetic. All while holding my pelvis in a vice.

There’s a little man inside of me, and he’s angry. He wants to get out and he will stop at nothing to escape. Everyday he stabs and claws away, trying to dig himself out. But when Aunt Flow is nearing, and he can sense her presence from miles away, he calls his buddies and they use all of their strength clawing, scrapping, biting away.. they never succeed. But a week after Aunt Flo goes back to her castle, his buddies go back to their caves and he eases up a bit. But he never leaves, he never stops trying.
And don’t get me started on ovulation.. I say I feel as if I’m 10 mins away from giving birth to an elephant. And not a baby one either. A full grown elephant. The pressure in my butt and vageen, my LORD!

  • Tell them to grab their bottom lip and pull it over their head
  • Like your ovaries are being twisted and being attempted to be pulled out of your asshole

Fibromyalgia

Image may contain: one or more people and text

  • Try to imagine having bruises all over your body every single day.
  • Full on flu with body aches 24/7. Sensory issues that have made me curl into a ball, fingers in ears. Delayed responses due to brain fog.
  • it is like someone took my skin off, turned it inside out, beat it black and blue and then put it back on… the bruises are there, you just may not be able to see them…
  • Carrying 4 lead weights around 24/7 without ever being able to put them down or feel like you’ve been hit by a double-decker and bruised feeling/pain everywhere.
  • Like my muscles are being put through a meat grinder!

 I had a girlfriend who got the shingles. She said to me “I think I finally understand what you are going through, except mine will eventually stop and your pain is forever. It’s sad that even some of our best friends aren’t quite sure whether to believe us or not!

Chronic Pain (various illnesses)

  • Like someone took a baseball bat to the back of my head, then just for fun – shoved a lightning bolt through my skull. – Occipital Neuralgia
  • I tell people: let me light your leg on fire, the let me put a vice around your thighs and finally give me a cattle prod and shock you in the LB and tailbone – CRPS type II.
  • It feels like my body is at war with itself, like every part of my body is being crushed. Electrical sensations throughout my entire body and like my knees will give out any moment. –  Lupus
  • Jolts of electricity flowing through the limb while getting a 3rd degree burn after getting dosed in gasoline (think R2D2 when it got zapped crossed with any horror/ action movie where someone is going down in a ball of death inferno). Then, coat the limb in honey and lay it across an ant hill to let recover from the burn – complex regional pain syndrome (CRPS)
  • Imagine a pencil being bent to its extreme just before it breaks, now imagine that pencil is your ribs. Imagine the pain you’d feel – costochondritis
  • Imagine what it’d feel like to have your bones grinding together for the spine pain, and for the pain where the ligament meets bone I describe it as an intense stabbing pain. – Ankylosing Spondylitis

Have you ever rolled your ankle or stubbed your toe really hard and you see these white hot flashes in your eyes well that’s what my spine feels like all day long the second I get comfortable it happens again and then I get this tremendous jolt where I feel like electricity is screaming down my spine directly into my left leg the rest of the time that leg is stupid and does what it wants and parts of it you could stab with a fork and i won’t feel it at all. Also my anxiety feels like an elephant is sitting on my chest and i can’t breathe and then what is best described as a surge of feelings forcing my body to want to leap in every direction at once till it becomes so confused it stands completely still and prepares for impact. My spine is broken at T11 surgery is too risky and I had my coccyx removed because it was dislocating. I have terrible PTSD and anxiety from the car accidents that caused my life change and the chronic pain exacerbates it tremendously.

These stories are real, and there are many more out there like it. Each and every word above fuels my fire to make a change. Thank you to everyone who shared their stories with me. We will fight this fight together.

 

Advertisements

Leave a Reply

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

WordPress.com Logo

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

Google photo

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

Twitter picture

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

Facebook photo

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

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.