"They Told Me I was Making it All up...." Sexism, Abuse, and a Medical System that just won't listen / A.J. Hendry
“They told me I was making it all up, they labelled me mentally ill, and told me there was nothing I could ever do a“bout it.”
Rachel’s story is one, which, if you haven’t experienced discrimination or prejudice when utilising DHB services, you might struggle to believe.
You might even say she’s made it all up.
But, in the age of #MeToo, we should have learnt the importance of listening – and believing – the experiences of others.
For Rachel, being sick wasn’t something new. She had been a regular user of the DHB system her entire life. Growing up, there had always been something going wrong with her health. From chronic infections, or allergic reactions as a kid, to constant sickness in High school, and increased heart problems in Uni. The medical system told her over and over again “you’re just unlucky.”
It wasn’t until after she’d left Uni and started working, that she was given a diagnosis by a private specialist who worked outside of the DHB system that finally made sense to her.
It turned out that Rachel had a rare chronic illness called Ehlers-Danlos syndrome, or EDS for short. EDS is a condition which affects a person's skin, joints and blood vessels, and, if not managed appropriately, could have potentially fatal implications.
The diagnosis felt right to Rachel. It answered a lot of the questions her medical history posed.
Yet, even though the diagnosis was backed up by two geneticists from the National Genetics Service, when the diagnosis was presented to the staff at the DHB working on her case.... it was rejected.
“I was told I was making it all up, and that I needed to admit that I had Mental Health issues.” Rachel recalled in frustration, “I was sent to a have a number of psych evals by different professionals, and was cleared by each of them. They told me that there was nothing wrong with me mentally. Yet, the leading psychologist in charge of my care from the DHB wouldn’t accept their assessments.”
“Instead he had it put in my notes that I was mentally ill and prone to lying about my symptoms.”
Rachel tried to stand up for herself, she knew she needed medical attention for the problems she was experiencing, yet her psychiatrist blocked her at every turn.
Feeling completely ignored and unsupported by the medical staff assigned to care for her, Rachel made the decision to lodge a complaint about the psychologist with the DHB. However, after following the DHB’s complaints procedure, she was left disappointed.
“They didn’t properly investigate. I went through all the channels, I put in complaints, I only asked for the offending doctor to be removed and [for me] to get medical care. But, they asked the psychiatrist if he had done what I said he’d done, he denied it, and they refused to investigate further.”
Instead Rachel was told that she was a liar, mentally ill and unfit to make decisions for herself.
Rachel was horrified. She had been assessed multiple times by professionals outside of the DHB system who provided extensive assessments to the DHB proving otherwise, yet here was this man telling her, and all these other professionals, that they were all wrong.
Rachel doesn’t know why she has been treated so poorly by the medical staff within the DHB. But, she suspects that sexism within the medical community does have a part to play.
“The Doctor didn’t even assess me before jumping to the conclusion, that because I was a woman I must have anxiety or some other mental illness.”
Rachel believes that there is overt sexism within the health system.
"I do think there is prejudice, I think that if I was a man I would have been treated differently." And that feeling, according to Rachel, is a common one within the chronic illness community.
“I know people who – as a female – if they go in with their partner, they are not talked to, the partner is talked to. Or I’ve known people, who have had doctors ask to call their husbands, so that they can get the real story.”
Rachel says that women are often dismissed by medical professionals and are just not believed. “It is put down to anxiety, or they say you’re overreacting, or exaggerating.”
“I feel like I have been raped by the health system.”
Rachel understands that is a loaded statement, but for her, it is the only way she can describe it.
“I have been physically shoved by staff at the DHB, I’ve had my support people verbally abused, I’ve been in consultations where my support people have left in tears because of the way they have been treated, because of the way they have seen me be treated.”
“I’ve had all my rights violated [by the medical system], I’ve had them lie to me, try to trick me, pull my clothing off me without my consent! If I did have a mental illness, is this really how I should have been treated?”
“The health system has taken my dignity from me. I have been emotionally and physically stripped.”
“Growing up, you learn to place value on yourself, you learn to respect your body, and you’re taught that what you do with your body, is your decision, that you should have autonomy over it. And having that taken away from you, having other people decide who gets to touch you, and how they get to touch you, and whether you have the right to say yes or no to someone doing something to you. It destroys you.”
And so, Rachel is stuck. She can’t get treatment for her condition, because the Doctor she is under denies that her illness is real. She can’t get another opinion, because the DHB have refused to take her complaints and concerns seriously, and will not provide her with a different doctor and medical team.
“I can’t even get a lawyer, they won’t go against the DHB because that is where they get their money from.”
“The saddest thing about this, is the level of corruption within the DHB. Instead of admitting that they got this diagnosis wrong, they have dug in their heels and covered it up.”
Rachel believes that the health system needs a huge overhaul.
“It needs to be smashed apart, and we need to have a voice in recreating it!”
“How can it be possible to be misdiagnosed, yet be told that there is nothing I can do about it. Even though I have another diagnosis that proves what I’m saying?”
Rachel doesn’t have the answers, but she is adamant that something has to change.
Her experience of the medical system in New Zealand has been horrific. She has been abused, neglected, and every step of the way her voice has been both ridiculed and ignored.
But, Rachel refuses to be a victim. Instead she is fighting for her rights, and for her voice to be heard. Rachel knows that nothing can change the past, but she is hopeful that her story can begin to change things for other young women who follow in her shoes.
Her message to the medical community is simple.
Listen to us.
“New Zealand doctors need to increase their awareness and understanding around what EDS is, and how it affects people.”
“EDS patients are either labelled as addicts or mentally ill. There is huge discrimination and lack of awareness. People get told ‘It’s in your head.’”
It’s not right. And it has to change.
A.J. Hendry