Handle With Care
I saw this tweet the other day (credit to @AmelieMeltzer) regarding the recent discussion around Selma Blair, an American actor who has been open and frank regarding her diagnosis of MS:
"Selma Blair is white, wealthy, & literally famous and still doctors shamed her and dismissed her symptoms for YEARS. Imagine the barriers women who do not hold these privileges face when seeking care. We've gotta do better"
This got me thinking about a topic that is close to my heart, and mainly bowels; the dismissal, and oftentimes condescension, of women’s’ pain by medical professionals.
I'd bet my house, boyfriend and cat, on the simple and depressing truth; that almost every woman with a chronic illness has experienced some form of medical-centred dismissal in her sickly history. OK, in the interests of transparency, maybe I wouldn’t bet my cat on it, just in case someone with too much time on their hands fact-checks this, but you can absolutely have the other stuff.
Maybe it’s even dismissive of me to dilute my own theory down to just women with chronic illness. In fact, its highly likely that most women have experienced similar behaviours when visiting their doctor’s office, chronic conditions or not.
Disclaimer before I properly begin: It’s important to understand that I do not intend to bash doctors here. I deeply and enduringly LOVE everyone who works in the medical profession and have had my own life personally saved by them time and time again. I also wholly appreciate that working with patients’ day in day out is an exhausting and often thankless job, and I would never want to be seen to degrade any of that whatsoever. So now we’ve gotten that out of the way, lets get into it.
So what sort of unpleasant ‘behaviours’ am I talking about here exactly?
From a personal viewpoint, I have countless tales of instances where I have been disbelieved, doubted, accused of overreacting about or implying my pain is worse than it is.
All from doctors or nurses.
I've almost died because I was repeatedly told there was nothing wrong with me when essentially my body was eating itself from the inside and rapidly shutting down. This is depressing enough on its own, but I’m also well aware I’m absolutely not alone in this. Those of my friends who, like me, live with chronic illness(es), all share similar horror stories. From the dramatics of near-death experiences to the more mundane, but still upsetting, idea of being made to feel like you are a hypochondriac; all of these situations leave us anxious, afraid and increasingly frustrated.
Of course, a situation like this would be bearable perhaps were it a one off. But sadly, these experiences are recurring. We are told repeatedly that our symptoms are all in our heads, that we are overreacting or being hysterical. This insinuation that we are dramatizing our illness is a common thread amongst women all over the globe. The general consensus amongst the media, and men with a below average number of brain cells is that we just can’t keep a lid on those pesky emotions of ours! We just aren’t able to walk past a cat sanctuary without slipping on a puddle of our own tears and ruining our petticoats, so how can we expected to understand how our own bodies work?!
Having been faced with male doctors, specialists and surgeons all telling me there is nothing wrong with me when I categorically know there is, I understand and share the frustration that all my fellow ladies entering hospitals feel. One of the most excruciating things to do as a woman, is break down in tears in front of one of these men. All it does is confirm their unashamedly sexist opinion that we are overly emotional and therefore overplaying our symptoms. Maybe we are doing it for attention? Maybe we are doing it because we just love to be around aging doctors whose attitudes are stuck firmly in the 1930’s so that we can breathe in their steak and kidney pie scented musk? Either way, what we would know, we’re too busy thinking about bunny rabbits and periods.
Talking of periods, as we women always are, matters of the vagina and it’s surrounding colleagues are a common topic rife for this style of dismissive doctoring. We women are often told we just need to ‘deal with it’. This is just the way the body works, we are told. We’ll just have to take stronger painkillers or start wearing sanitary towels with the wingspan of a Boeing 747. We must understand that periods are just part of being a woman and we should just get the kitchen cleaned and distract ourselves.
Ok I might be being a tad facetious here, but as women we do understand our bodies, our cycles, our pain. This means we also know when something is not quite right. We share stories with our female friends, we take advice from fellow vagina-owners and visit the doctor generally as an absolute last resort. Often risking our lives in the process. We avoid dealing with male doctors because we are routinely humiliated, patronised or talked down to.
Our periods are often just that, a full stop to any further discussion around what might be at the root of our symptoms.
A strange contradiction on this outlook is the idea that as women, despite being considered delicate little flowers unable to understand how our own defunct carcasses work, we are generally expected to 'deal' with things much more stoically than perhaps our male counterparts. For having such a gentle, liable to break at the slightest hint of a breeze, or breakdown in tears at a dog rescue advert-reputation, us women seem to be expected to shut and put up (with it). Maybe it’s because we’re the ones who have the babies. After all, if we can handle that level of pain then why are we complaining about everyday symptoms like excessive rectal bleeding, lumps where they shouldn’t be, or stomach pain strong enough to flatten an elephant?
The thing is, we are women; not wombs. Not all of us have, or even want to have children. Not all of us want to be faced with the assumption that our main goal is to rear a child. Often some of us just want to be ‘well’. We don’t want to hear how ‘lucky’ we are that we are still young, or physically able to bear a child, or that we don’t have a much ‘worse’ condition.
We just want to feel understood and heard.
Some of my most memorable moments in my sickly history have come from women (and in the interests of transparency, some men) who have taken the time to listen to me and act not on their own assumptions but on my words. They have not based their diagnosis on how I ‘appear’, my weight, or my ability to hold down a job. They have acted on my feelings, my admissions of my often shameful symptoms, and on my courage to be completely honest with an abject stranger.
It’s worth remembering that many of us still fear doctors. We are afraid of hearing results that will essential change our lives. We are anxious to bare all, emotionally and physically. We are dog-tired from explaining the same story over and over again to new faces each time; anxiously waiting to see how they will respond. Whether or not this doctor will ‘get it’.
In chatting with women from all over the world, friends and strangers, I’m well aware that I’m not alone in my steady and simmering terror in meeting new doctors. My absolute exhaustion at feeling misunderstood. My feelings that I’m going slightly mad.
Here’s a beyond grim top 10 of some things women I’ve interviewed have been advised by medical professionals:
1. “This medication should be working based on your physical test results” – does this then mean the patient is lying? Or that she wasn’t ‘ill enough’ to warrant ‘better’ medication?
2. “You should be thankful you don’t have cancer and should go home and enjoy your kids” – Implying that cancer is the only illness worth treating? That she should just put up with life-altering symptoms just because ‘it could be worse’?
3. “You have an eating disorder” – this is a common thread amongst women’s stories of medical mismanagement. Rapid weight loss often drives doctors straight to this conclusion. Despite our continued and increasingly frustrated protestations to the latter.
4. “You won’t admit it so there’s nothing I can do” – regarding the above; assumed we have an eating disorder and holding a proverbial medical gun to our head that if we won’t admit something we know to be false we won’t be treated.
5. “It’s just anxiety, you just need to stress less” – it’s well proven that anxiety and stress do generally serve to exacerbate or even set off symptoms of chronic illness, in particular those of an auto-immune nature. But let us at least get to the diagnosis before we dismiss any potential condition as ‘just anxiety’ shall we? Also have you tried to ‘stress less’?!
6. “Just be glad you don’t have ____” – playing medical Top Trumps is cringe-worthy enough when patients do it, but doctors? Depressing.
7. “Some doctors don’t believe in that.” – this was regarding a diagnosis of M.E. after years of disabling symptoms. How utterly soul destroying to hear that even those who should be knowledgeable on your condition don’t actually believe it to be a real thing.
8. “You just have a bad diet” – bearing in mind that most of us don’t rush to the doctor at the first sign of trouble. Sadly, we find our fingers reaching for Google and awaiting the inevitable on-screen death sentence that follows. We then try to cut out foods, eat more of certain foods, drink less alcohol, drink more water, do anything and everything we can think of, ultimately THEN seeing the doctor. So, don’t teach your Granny how to suck eggs. Or eat more of them.
9. “I’m sure you’ll be perfectly fine” – this usually comes after a 5-minute consultation. A decision made on looks alone, no examination, no blood tests run, no samples taken. A dangerous assumption based on nothing but speculation.
10. “Women your age don’t get cancer” – I mean unacceptable doesn’t even touch the sides here in terms of describing this one.
All these examples barely scratch the surface of the countless inappropriate moments we women have shared with medical professionals. And again, please don’t misconstrue this piece to be an attempt to diminish the incredible work done by the majority of our doctors.
But we can still do so much better. We can treat the person as well as the patient.
We are whole people; our conditions are not our identity. But just as you wouldn’t meet us for the 1st time and insult our profession, our clothing, our family; don’t insult our own pain. Our own insistence that something is wrong shouldn’t be dismissed so readily based on ‘time-wasters’ you might have come across in your career to date. We have lives to live, families to raise, careers to advance. We don’t want to waste our time either; we don’t want to be in your office, on your hospital bed, on your operating table. Unless of course, we know that we absolutely must.
Please listen when we tell you we know our bodies.
Don’t wait to take us seriously.
Don’t make us wait years to be understood or accepted.
Our lives literally depend on it.