Updated: Jul 13, 2019
Check out Part one of my guide here for the introduction to this series.
Self-advocacy as a patient with a chronic illness is one of the most important lessons to learn. The thing is – it’s ridiculously complicated and super hard to make yourself do.
By nature, I am not a demanding person. Sure, I’ll ask someone to do something if I need them to. But if I can see it’s putting them out, I won’t put any pressure on them. This is a character trait that has not served me well in recent years dealing with chronic illness.
I grew up with a notion that living in New Zealand with a publicly funded health system meant if you were sick, you got looked after. No questions asked. No ridiculous waiting times. No being forgotten about or dismissed. Boy was I wrong. I mean sure, if you’re having an obvious heart attack or you’ve broken your leg, our health system has it sorted. There are many many wonderful people who have your back, no questions asked, and often no money spent.
Then… it comes to chronic illness. And yes, this includes mental health. New Zealand has a woeful discrepancy of care when it comes to chronic conditions. Among those reaching the news currently are the mental health crisis, and, topically, Ehlers-Danlos Syndrome.
According to Newshub – the mental health crisis here is causing mental health patients to wait upward of 8 hours, sometimes 12-24, in an emergency mental health crisis. I can’t think of anything worse. The Government Inquiry in Mental Health and Addiction stated, “We heard of services stretched to breaking point, a lack of timely, responsive and culturally appropriate access, few options and a lack of 24/7 services”. (mentalhealth.inquiry.govt.nz)
Meanwhile, for those of us living with Ehlers-Danlos Syndrome, the coordination of care is little different. According to Stuff.co.nz: “It is often misdiagnosed — if at all — and district health boards have no protocol in place to treat patients with the syndrome.” (www.stuff.co.nz). Personally, I had to fork out $450 to see a private specialist in order to receive a formal diagnosis. There was literally no Dr in our public system up to the task. It was a formal diagnosis really needed to pursue because I have been physically abused by paramedics, dismissed by ER doctors, and told my problems are ‘all in my head’. The formal diagnosis would allow me to be taken seriously. Even then, I had to wait a full 6 months to see him, while my body experienced a rapid decline. There was simply nothing to be done.
I thought once the diagnosis had been received, navigating the health system would get easier. Ha! No, sir. It turns out – even with a diagnosis – reaching out to support services is the most tremendously difficult thing to do. Our condition is rare, and there is usually no imminent threat of death. So DHBs are not jumping out of their seats to help. I have just climbed to the end of a battle with my local disability aid organization. It took 10 emails, 3 phone calls, the creation of 2 extra medical certificates and 1 extra letter from a private specialist. On top of the 4 I already sent. All to make sure that the specific type of EDS I have affects me in a specific enough way to qualify me to Ministry of Health funding. I am still not promised any actual help.
This process, aside from being utterly ridiculous, was rather demoralizing for me. It felt like they really didn’t want to help me. I felt alone. Invisible. I guess the illness coined it's name somehow! And as I said, I am not a demanding person. But this was not the first time and it won’t be the last that I had to step WAY outside my comfort zone and BE demanding in order to get what I knew I needed.
I’m not alone either. I asked some fellow bloggers their experiences:
Jo of Tea and Cake For the Soul said: “I had to wait a long time to see a psychiatrist - it took three months to get my referral and he ran late on the day by almost an hour and a half…There was no talk support or explanation about the illness from him whatsoever. I left feeling worse than I had gone in.”
Becca Pava of Chronically Alive said: “I’ve gone to the emergency room for pulmonary embolisms, sepsis, hypovolemic shock, heat stroke, and dangerously low potassium levels, and been treated like some dog poo the ER doctor stepped in. They’ve sent me home so critically ill, that by the time I got to a better hospital I’ve needed full life support in the ICU”.
Hannah of Crunch and Cream, speaking about her struggle with suspected endometriosis, said: “I was told I'd have to just live with it like every other woman. My periods are 3 weeks long and I'm bed bound with severe migraines and dizziness...can’t even get up to the shower!...I just wish at the time I'd had the confidence to complain and stand up for my right to compassionate care".
All three of these people, along with me, experienced a lack of responsiveness and often downright abuse and bullying at the hands of the medical profession. We had to learn to advocate for ourselves to get through. And unfortunately for us – this is a skill we all have to learn. My strategy is that before I gear myself up to make that next phone call or send that next email to harass whatever organization is trying not to help me - before I strike out for the top of that mountain - I literally give myself a talking-to. I remind myself why I deserve what I am asking for. Why I need it, and why I want it. I remind myself that I’m worth it.
Sometimes it can be hard to know if we actually are entitled to the care we think we need. I know for me, I’ve become so used to being dismissed and forgotten that I start to think I really am asking too much, and I should learn to deal with my health on my own. Friends – this is impossible - and incorrect!
A good place to turn when you are unsure is actually your District Health Board or the government agency in your country that provides or regulates health care. Every country has a set of rules published around patient rights. These will be accessible to you if you ask. Even your local GP or PCP clinic should have the information. Learn what your rights are and try to be strong. Make sure your rights are being respected because a lot of the time, the only people holding medical professionals to their own standards are the patients.
It’s not easy at all! But I believe in you. You can do it! Don’t let those lazy so-and-so’s forget about you. You’re worth more than that!
Please take a moment to have a look at my lovely contributors, they have some wonderful content:
Becca Pava - www.chronicallyalive.net
Hannah – www.chruchandcream.com
Check out Part 3 of my Guide here!
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