Empowering Yourself, Controlling Your Health: Advocating for Yourself in a Broken System

Yesterday I talked about what to expect at your first gynaecologist appointment.  Today, I want to discuss some of the difficulties in getting there, and in accessing good healthcare beyond that point.

When I was fifteen, my period pain started to become unmanageable.  When I was 25, I was diagnosed with endometriosis.  That’s ten years without a diagnosis.  All too many women have similarly lengthy stretches between first seeking medical advice and being told they actually do have something wrong with them, and for many the time in between is filled with statements like:

“Period pain is normal.  All women get it.”

“You just have to learn to manage it.”

“You’re exaggerating.”

“It will all get better when you have a baby.”

For some people, the pain will eventually become so extreme that they go to the emergency department, where instead they may overhear:

“She’s just trying to get drugs.”

“She’s faking it.”

“Just give her some panadol and send her home.”

Even from a gynaecologist, who you would expect to understand and actually support you, some women report being told that they will not receive further help unless they try pregnancy, or being aggressively told to persist in medication that they report is giving them dangerously bad side-effects.

Women are already on the back foot in medical care; our pain is perceived as not being as serious, our conditions are diagnosed as due to stress or mental health issues, and we are treated as more likely to exaggerate.  We are less likely to be given painkillers than men.  Power over our own medical care is often taken away from us by a paternalistic system, particularly during pregnancy and childbirth.  Tides may be changing; obstetric violence is finally being discussed more widely, and hopefully education will follow, but until then we will have to continue to deal with a system that does not prioritise our pain or treatment, does not listen to us, and is terribly uneducated on endometriosis.

We also face the problem of our own socialisation.  As discussed in my post yesterday, we are too used to minimising the severity and effects of our own pain.  My husband likes to quote the time I described the pain that had left me practically unable to walk for a month as “not ideal”.  I couldn’t help it.  I don’t want to be a burden on people or be perceived as hysterical or worse, “needy”, so I play it down.  Further, women are often socialised not to be assertive, to put others ahead of ourselves, and to accept what we are told without questioning it.  After all, we mustn’t be bossy, shrewish, nagging or selfish, must we?

So, how do we deal with all of this when we need healthcare and people aren’t giving it to us?  Here are my tips for navigating a system set against us:

  1. Learn to be honest.  Don’t hold back your noises of pain when the doctor is poking you in the tummy.  If your pain is an 8, don’t tell them it is a 5.
  2. Let yourself be emotional.  If your pain is bad enough to make you cry, cry.  Whether out of sympathy or a desire to make you someone else’s problem, I tend to find that crying gets you further than holding it in.  It’s not about making the hospital staff like you because you are quiet and passive; it’s about making sure that you get treated.
  3. Have a letter ready.  If you can get a letter from your GP or gynaecologist to take with you to emergency rooms outlining your condition and the possible effects, you already have proof right there of what you are going through, and hospitals are less likely to dismiss your pain as a bad period.  If you can also have a letter detailing your current medications, that will have to save you scrambling through your brain for names and dosages when all you want to do is hug your midriff and sleep.
  4. Don’t just describe your pain.  Tell them about what it is doing, too.  Rather than just saying, “my pain has been an 8 for the last three hours, and a 6 for at least two days,” follow it immediately with, “which has prevented me walking or standing up without help.  It is bad enough that I can’t concentrate enough to drive and I am having trouble focusing on our conversation through the pain.”  You’ll probably be a little less formal than that, but you get the gist.
  5. Demand support from the hospital.  Many hospitals will have a patient advocate or social worker who can come and visit you and assist in advocating for your pain.
  6. Escalate it.  If you are being treated like a drug seeker or like you are not genuine about your pain, you can and should complain.  Most hospitals will have a complaint line you can call to discuss the issue.
  7. Have support with you.  If you can have someone with you who knows either you or the disease well, they can do a lot of the advocacy for you.  It is really hard to put up a fight for yourself when you are exhausted and in pain, and if you have someone else who can do it for you it is a huge advantage.  I have also found that I am treated better when my advocate is my husband.  My mother is the most amazing supporter and knows instinctively what I need (more blankets, a drink, help readjusting, a hug), but my husband seems to get taken more seriously by hospital staff and when he is with me I am seen quicker and more often.

For less urgent care, such as with a recalcitrant GP or even gynaecologist, these are some other tips I would have ready to go:

  1. Don’t let them blame it on your weight.  It is well-documented that doctors like to blame literally everything on weight if you are fat.  Sure, being overweight can cause health problems but it does not mean that being overweight is the cause of every or even any of your health problems.  Ask your doctor, “ok, but what else could it be?”  If they refuse to give you any other diagnosis or options beyond weight loss, then –
  2. Ask for a second opinion.  You do not owe it to any doctor to have them be the only doctor you see.  Your health is important and you deserve to have it treated well.
  3. Insist on a referral.  If you ask for a referral to a particular specialist, doctors do not have a good reason to prevent you from going to that specialist.  It’s your time and your money, not theirs.
  4. Don’t be afraid to complain.  If your doctor or gynaecologist makes statements that are rude, discriminatory, or just plain wrong, complain.  Complain to the practice manager, to AHPRA (the Australian Health Practitioner Regulation Agency), to the Human Rights Commission.  It is not fair for you to be dismissed or mistreated, and if they are doing it to you, they are doing it to others.
  5. Demonstrate your knowledge.  Sure, as a professional it can be frustrating to have someone come in and act like their googling trumps their hard-earned degree and experience, but you know what?  You are living with the symptoms and the effects, and you can tell the doctor what that means for you.  If a doctor is saying, “it’s just period pain,” you are perfectly within your rights to say, “no it isn’t.”

Now, all of this is incredibly easy to write, and much harder to do.  My job is literally to advocate for other people, and I’m good at it.  But advocating for myself?  Nuh-uh.  I cannot get past the need to be polite and likeable.  I’m trying, and the more I do it the better I get, but it is still a learned skill.  Ultimately, though, it is a skill you need.  The barriers are there, but so is your need, so I urge you to take your healthcare into your own hands and stand strong.

Do you have any tips for dealing with difficult doctors?   What have been your experiences with the medical profession?  Please share in the comments.

 

 

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