After my post about chronic illness being a fulltime job, and how hard and exhausting it can be, a few people asked me – how do I manage to self-advocate? So I’ve put together a list of tips.

Medical and social welfare systems are complex and difficult. They can be rigid structures and they don’t always have your best interests at heart. And even if they do – they don’t know you. You know you. That means it’s up to you to stand up for yourself. Harsh, but true.

I need to state again the reasons I am lucky and privileged, and how they  make it easier for me to advocate for myself.

1. I’m educated, and my education happens to be in communications. People take me seriously because I know what language to use.
2. My education also means I can research what help is available and follow it up – ie counselling paid for by ACC, what rights I have through my GP and who they can refer me to, what free or private services I can seek.
3. I’m white. Despite being overrepresented in mental health data in New Zealand, Maori and Pacific people do not get the same  level of help.
4. I have just enough financial means – ie, I can access the internet, I can visit my GP, I can pay for prescriptions.
5. I’m stubborn.

Also, I should have added:

I have a really, really good support network of both friends and medical professionals. I’ve been able to build that network because of much of the above, and without it, I wouldn’t have the continued strength to push for help for myself. It’s kind of like having a wonderful sturdy step stool I can use when I need that extra boost. They’re the ones that get me high enough to reach the window I need to yell into. That’s a really dumb metaphor but the upshot is: I know I’m not going things alone. I can stand up for myself because there’s someone behind me telling me I can.

So, how does one be a good self-advocate?

 

How to self advocate

 

1. Keep notes on EVERYTHING. This cannot be overstated.

I have become a copious note-taker. I use the memo app on my phone almost as much as I open Facebook and then close it again because its full of shit.

Seriously, though. If your memory is anything like mine, and you’re constantly being overwhelmed with a lot of information, you need to write as much of it down as possible. Even if at the time it seems inconsequential. Doing so has been the reason I’ve been able to identify when I’ve been given clashing pieces of information, or plain wrong information, or when a doctor has said they’re going to follow something up and they haven’t.

You need to become your own personal historian. It sounds arduous, but it’s become second nature to me. I also make lists of questions or concerns before every appointment with doctors or specialists or WINZ. Then I can just tap their answers in.

 

2. While we’re talking record-keeping: Never throw away any documents. 

I have every single letter I have received from WINZ since 2013 – and there are a lot of them. But that means, if my memory fails me, or they mess something up – I have record of it. I have a big old folder stuffed with it. I also have every letter from doctors, the hospital, ACC, etc. It takes up space, but it’s important. You never know when you might need that bit of paper. I even keep scripts so I can remember all the different medications I’ve trialed. Now that’s a scary list.

 

 

3. Take someone with you to important appointments

I know you might be thinking – how is having someone else there advocating for yourself? But trust me, this is really important. The someone you take doesn’t need to know all the background, they don’t need to do anything on your behalf – they don’t even need to talk. But having them there means:

A) Whomever you are seeing instantly becomes more accountable, because there’s two people to record the meeting, not just one.

B) The person you take can help you remember questions you wanted answered or objectives you had for the appointment, which is really important when you don’t get the opportunity to see specialists very often.

C) They can be the note-taker, so you can focus on the appointment, if that’s what you need.

And D) They can verify your memories – ie, you can call them up and say “Did Dr X say they were going to do Y, or am I losing my mind?” and they can say “Yes, I was there. Dr X did say they would do Y. You are within your rights to ask why that hasn’t happened.”

 

3. Ask questions

This is your time. You deserve and are entitled to answers. Whether you’re paying for them privately or through your taxes, these people are there to provide a service to you. Have your list beforehand, and don’t be afraid to add to it. Ask for clarification. Ask for things to be repeated. Ask for everything in writing, if need be. Be totally sure that you leave with all the information you need, and with shared understanding of what’s going to happen next.

Too often I’ve assumed a provider was going to follow something up, but I didn’t clarify that enough. Again, having someone there with you will help with this, even if it’s just that their silent presence gives you the courage to keep pushing.

 

4. Be patient and persistent

This one sucks. This one is harder than everything else. This one is what lead to me getting to breakdown point and writing that post two days ago. Being patient when the system is so slow and mistakes keep happening just adds to the pain. Having to be persistent when it feels like you’re getting nowhere just adds to the exhaustion. Unfortunately, these are skills you’re going to have to practice.

 

5. Know your rights

This might seem obvious, but it’s really important that you know exactly what your rights are; as a patient, as a beneficiary, as a citizen. You can only ask for those rights to be respected if you’re aware of them.

Do as much research as you are capable of. Most medical practices will have patient rights posters on the walls, but you should know them before you arrive.

• Here is the list of patient rights under the Health and Disability Act (1994) from the Medical Council of New Zealand.
• Here’s the list of Rights and Responsibilities of beneficiaries from Work and Income New Zealand.
• NZNow has a comprehensive list of the rights of citizens under different laws, such as human rights, health, police and legal, and privacy, consumer and employment.

 

6. Remember the people you’re dealing with are people too

It can be really hard to practice compassion when you’re absolutely at your wit’s end trying to get help. But it’s important to try and remember that most of the time, no one is trying to actively do you harm. They are working in an underfunded, under-resourced environment, within what is a basically a hostile system. If you treat them with respect, they will probably do the same. Not necessarily, but probably. You’re not going to get anywhere if you start yelling, as much as you might be justified in doing so.

 

 

7. Ask for help

Again, this might sound counter-intuitive, given that this is a guide to being an advocate for yourself, but no one ever won prizes for running themselves into the ground trying to be completely independent. I should know; if they did, I’d have a wardrobe full of them. One of the most powerful ways you can advocate for you is to put your hand up and say “I need help.”

 

 

8. Use advocacy agencies

Again, under the help umbrella. If you don’t have anyone immediately available to you, there are agencies around the country who offer free advice and support. Googling your local Citizen’s Advice Bureau is a good place to start.

 

This probably seems like a pretty long list, and it is. It’s ok to cut yourself some slack. I honestly, truly never guessed so much would be expected of me in order to get something close to consistent care. Unfortunately, that’s been my reality. It may not be for others, but if it is, maybe some of the above will be something close to useful.

 

A big big big thanks

Thank you so much to my new supporters and patrons, following this week’s post about living with chronic illness. It’s been shared around far more than I expected and it pains me that so many people found it relatable; however, maybe they now feel a bit less alone.

If you feel like supporting me and this writing, you can do so by getting a copy of my zine Skeletal Mosaic, or becoming a patron on Patreon. Thank you so much.