“Each patient carries his own doctor inside him.”
― Norman Cousins, Anatomy of an Illness
I never could have anticipated the response the xoJane community gave me for my IHTM about appendicitis. So many young women shared their eerily similar stories and it made me feel two things:
2. And that we are bad-ass bitches who can change the way young women are treated as healthcare consumers.
The sentiments that echoed in the comments section made me incredibly woeful about the experiences of young women; told again and again that it was “all in their heads” or “PMS” or “stress” or even that we were making it up to get out of some physical activity. What have we, as women, done to convince the medical profession that this is valid?
The condescension we endure from medical professionals is not necessarily months and months into our illnesses; it’s not the throwing-up-of-the-hands- just-don’t-know-have-you-tried-this, responses — it’s the assumption, in the beginning, that we don’t know our bodies.
“Are you sure it’s not just your period?” for instance.
They may not realize how insulting it is. Or maybe they do and they just need to check off a box on their documentation. Either way, when did it become acceptable to sit across from a young woman who is in agony, scared to death, look her in the eye and accuse her of being completely ignorant of her body? Before she’s even been properly examined, no less.
Honestly, I don’t know the answer. I work in a hospital, so, if I can play devil’s advocate for a moment, I do understand how much red tape and back-peddling they have to do just to keep their licenses. I know that they document more than they see patients. I know that they have certain things that they must ask, must demonstrate, in order to get reimbursement from insurances companies. Often times, it’s not really the physician’s fault; the disconnect is much farther up in the food chain. Still, we seem to have reached an impasse where physicians can’t even vocalize if they feel uncomfortable reducing a woman to a subset of gender-specific symptoms.
Furthermore, the issue of pain management and treating pain is deserving of its own article. The complexities around placing stop-gaps to avoid people from abusing pain medication, building up tolerance and yet, somehow helping them suffer less is agonizingly complex. When you throw pain into the mix, it seems that a young woman is destined to have difficulties getting her needs met in a doctor’s office.
So, what I eventually figured out was that I had to be my own advocate— no small task when I was sick, in pain and depressed. But it’s at that point that it becomes essential to your survival, both physical and of self, to stand up for yourself. It’s not about being “against” medical professionals, but getting on slightly more equal footing with them. No, reading WebMD doesn’t make you a doctor, but you have every right to research and try to engage your physicians in a conversation. Although they may not always have time, a good doctor will appreciate your willingness to be active in your care. They won’t feel insulted or threatened. They won’t get defensive. Your only chance for survival is to educate yourself, which is more than just “talking the talk” — it means understanding the finances, your body, society’s attitude, what challenges your physician is facing in the hospital system they work for, and what the expectations are in your community.
This is huge. That’s why, along with patient advocacy, health literacy needs to be supported in and invested in by health care systems. We’re getting there, but we need more people to support and educate themselves about the movement. Health literacy addresses these and many other concerns related to a person’s ability to obtain — and understand information about their health.
On Twitter not too long ago, I posted about health literacy and a surgeon- a very respected one with a long career, tweeted me back saying that “Patients are either too stupid, don’t care, or both” when it came to health literacy. In my work I’ve encountered this paradigm on more than one occasion, and while it is frustrating, it just exemplifies the attitude in medicine around empowering patients; and the cavern between patient and doctor.
If you are reading this and what I’m saying is resonating with you, I encourage you to stand strong and never give up. Peruse the comments on my IHTM; what happened to me, in fact, has happened and IS happening to many other people. If you find yourself in those words, take comfort in knowing you aren’t alone, but take strength from those of us who have survived that you are not crazy, it’s not in your head, it’s not just your period, you aren’t a mental case or a liar or a drug seeker.
You are a human being, fighting to survive, deserving of respect. And if you have to fight for it, fight as hard as you can; and know that we’re all here for you along the way.
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