Gender Bias Downunder

By: Cynthia Toussaint, Founder, For Grace

January 29th, 2009 • Patient AdvocacyPrint Print

My partner John and I recently enjoyed a beautiful three-week getaway in New Zealand and Sydney.  Travel used to be so scary, but as I fly longer and longer distances, it’s an absolute joy and adventure discovering different lands and people.  In fact, it’s one of our top priorities.

One beautiful morning in Sydney’s Circular Quay, we boarded a ferry to see the zoo.  I immediately noticed a woman using a crutch, joining us with difficulty.  I thought “Good for you.  You’re one tough, spunky lady being a tourist with a disability.” 

In my wheelchair, I was already aware that Sydney was not nearly as accessible as New Zealand or say Europe – which came as a surprise. Then as the ferry departed and the harbour opened up to amazing views, I forgot about everything including my fellow mobility-impaired traveler.

The zoo was amazing.  You have to start at the top and work your way down, as it’s built on a breath-taking hillside – and all the while the Sydney skyline was in view. Paradise for sure.

I have to admit, I have a thing for kangaroos, and before long, I found myself amidst them in a unique exhibit that allows you to stroll – or roll – in their habitat.  Even petting them as they hop by.

There she was again!  My crutch-toting sister adventurer. We caught each other’s smiles and got into a conversation about the kangaroos and emus (her favorite).  Before long, she asked me why I was in a wheelchair. 

Not being in a spokespersons role, I made it brief (so unlike me):  “I was a ballerina and 26 years ago a ballet injury triggered a chronic pain disease in my body.”  And that, I thought, was that. 

She asked me what the disease was called.  “It used to be called Reflex Sympathetic Dystrophy.”  She responded with eyes widening, “I have CRPS!”  She then immediately shared clever anecdotes about how male physicians – and most everyone – disbelieved her due to her gender. 

John and I practically fell over into a pile of emu poop.  We were hearing first-hand the gender disparity half way across the globe. 

Due to the recent world awareness of CRPS, my new friend, Lynne, had been diagnosed and treated early.  She was going to be O-kay.  But she still wasn’t believed by most everyone.  We shared healthcare battle stories and talked much about the work at For Grace that is bringing the gender pain divide to light. 

She told me of the humor she’s armed herself with to deflect the abuse of disbelievers.  With her tight, British accent, she mocked herself, exclaiming, “You’re right!  I’m just an attention seeker.” 

That killed me.  How clever to turn the absurdity on the abuser. And she reported that no one had anything further to say after that retort.  Thinking that we Americans cornered the market on sass, it was an eye-opener to discover women all over this globe can stand up for themselves.

John and I spent two glorious hours bonding with beautiful Lynne, her 13-going-on-34 year old daughter (due to the stress of caregiving), and their Australian friend who insisted that we come back and let him tour us through the Outback.  Nice, nice people, those Aussies.

Obviously, being dismissed and discounted as a woman in pain has no borders.  At For Grace, we hear from women all over the world who make this known to us – but the global problem hit me on a profoundly personal level that beautiful day among the kangaroos.  Thank you, Lynne.

Cynthia Toussaint is the founder of For Grace, a nonprofit organization raising awareness about gender bias in treating chronic pain. As a leading advocate for health care reform in California, she has been featured in media including The New York Times, The Los Angeles Times, Public Broadcasting System (PBS), and National Public Radio (NPR). Cynthia has Reflex Sympathetic Dystrophy and fibromyalgia. Prior to her illness, she was a professional dancer, actor and singer.



Comments

Joan Carthan February 3rd, 2009

Hi, I’m a first timer and not sure what i want to say. I enjoyed your testimony. I’ve been wanting to take my daughter to Hawaii since her high school graduation; she is now going to graduate graduate school. I am determined to go making final plans as I write. Truth is traveling is sooo hard. Just getting to and from the airport is exhausting. Last visit in Chicago I used a mobile wheelchair. I never felt so invisible. I also felt like such a nuisance breaking the chair down putting it together, what a hassle. My daughter her boyfriend, my mom are all very supportive so its not them. Although my sister never would walk with me. It was nice to hear about your ability to travel so hopefully that will encourage me. Thank you.

Rochelle Odell April 11th, 2011

That was a wonderful story you relayed Cynthia. I travel at least once a year and pre-arrange for a wheel chair at the airport and tip the wheel chair people since they work for tips.  I only need it as far as the airplane entrance, and once we land, they have several lined up.  Once I get to the baggage claim area, my Dad and his wife are waiting for me and I always carry my crutches with me.  

I have been working so hard to get my still fledgling organization off the ground, but stopped at every corner by recurring Cellulitis and now Osteomyelitis, and it’s the Osteomyelitis that has caused two six week hospital stays in 2010 along with Home Health and me doing my own infusions. Then spending six more weeks again on two strong antibiotics in the hospital in Feb/March 2011.  When I tell the Home Health Nurses I do my own infusions twice daily, as I only see them once a week when they change the Huber Needle in my Portacath which has been a God send since my veins decided to disappear about ten years ago, for some reason they find it so hard to believe.  Then I just tell them I was an ICU Nurse Tech and EMT for Off road races, and they shake their head, like okay, sounds like she knows what she is doing, LOL. 

 My PCP said I could do my own subq 20% Lidocaine injections and it was hilarious to watch the Nurses watch me stick myself in about three different spots.  It was like they were learning to do subq injections to patients and the looks on their faces was down right hysterical, and why they had that reaction was beyond me.  I asked one of the male Nurses why was he making so many weird faces?  He said he had never seen a patient give injections to themselves like I was.  I just told him I had been doing it for over 16 years and in all reality, it isn’t much difference than a Diabetic doing their own injections.  Then he said, but here, we do the injections.  I told each Nurse, I do my own injections, because if you do them, for some reason, it seems to hurt a heck of a lot more than when I do my own. I have gotten used to their weird looks.

Although my last stay, as with the others, I spent five weeks of the six in a Skilled Nursing Facility and I had a roommate this last time that made me so angry, I went over to her in the middle of the night and told her if I could smack her I would and called her a not so nice name to boot, so unlike me since the CRPS took over my life.  She decided the TV should be turned off at 8 PM. I am a night owl and don’t go to sleep until 3 or 4 in the morning.  She os deaf  and initially I went out of my way to keep my light turned off so I wouldn’t disturb her and since my hearing is still excellent I can hear the TV when no one else can.  But that one night I was so angry at the grief and stress she was causing me.  I had already called the Nurses in for their intervention, but that one night was one night too many.  I remember her playing games with turning the TV off and I would turn it on.  I even took it away from her that night and my frustration surprised me.  I swear, if I ever turn out like most of the elderly women there, I want my family to take me out and shoot me.  Her daughters treated her like a baby, adding to our disagreements.  The only good thing, one was a good daughter and one was a not so good daughter and played Mom against each other.  I don’t know who was the older of the three or the younger. But for me to get out of bed, being a former ICU Nurse Tech, and actually call an elderly woman what I did and then threaten her with bodily harm, which I would never do because it would hurt me more than her, and get me booted out.  So the next three nights, I went down to the patient lounge and watched TV with the lights off, so by the time I got back to my room she was snoring and I could turn ours back on, without her playing her silly games.

I met an Aussie friend via an RSD site, and I kick myself for not keeping in contact as Mary is an angel and would send me a beautiful, hand made angel for three Christmas’ in a row.  She had the same horror stories so many women who have this disease do.  I was a rare one to have mine diagnosed three months after the surgery that triggered it, only it took twenty two months before treatment could be started.  Mine finally hit my right left and foot two weeks ago.  I have a large bruise on the top of my foot and above the ankles and it hurts so bad.

Best of luck.  I may be down in the Los Angeles area soon to get the much needed surgery from the very hospital I worked at, USC University Hospital. I brought the write ups about their Hand Team, plus the doctor they wanted me to see, performed my first I & D many years ago.  I will have to find a place to stay down there and they list a lot of hospitals.  My Dad’s wife works for one of them and can get me a really cut rate in a five star hotel, especially if I have to undergo OT, which I know I will along with suffering with a CPM machine on my right hand that has the Osteomyelitis.  Things just go from bad to worse.
Rochelle

Nathan B November 25th, 2013

Great article.  Disbelief at invisible pain disorders is not just a women’s issue, though I can see that the scales are heavily tilted in that direction.  Hopefully societies worldwide will realize that pain disorders are serious, even when you can’t see the source.  My thoughts always go out to the people who have to suffer pain without support or proper care.

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