Waiting for the knight in shining armour…

It’s the classic tale.
Princess gets in trouble. Knight in shining armour comes charging in to save the day. Everyone lives happily ever after.

But when you grow up, you realise that’s not how it works in real life.
Especially in the medical system.

Whenever I’m heading to hospital, my Mum always reminds me that “only the squeaky wheel gets oiled”. She’s not saying I should be an obnoxious patient. She’s pointing out that only people who use their voices get help.
This is called “self advocacy”.

The English word “advocate” comes from the Latin ‘advocare’, which means “to call to one’s aid”. If the fairy tales were true, whenever I was in distress I could call on a knight for aid – he would be my advocate. He would stand up for me; he would go to fight on my behalf. But in the real world, where there’s no knights, we often have to self advocate. Self advocacy is standing up for yourself.

In the medical system, this means you understand what your rights are, and you politely but firmly make sure that they are honoured.

Here’s where we run into the two biggest problems.
(1) Not knowing what your rights are
(2) Not knowing how to make sure they are taken seriously

The first problem is easy to solve. Health Consumers Queensland sums up your healthcare rights as the following points:
1.  You have the right to safe, high quality healthcare.
(Access to healthcare when you need it + healthcare that looks after your needs properly)

2.  You have the right to be shown respect, dignity and consideration.

3. You have the right to be informed (in a way you understand) about services, treatment, options and costs in a clear and open way.

4.  You have the right to make decisions and choices about your care.
(You can ask for a second opinion. You can ask for more time. You can ask about alternative treatment. The final decision always rests with you).

5. You have a right to privacy and confidentiality of your personal information.
(You also have the right to see your records and any information regarding your health).

6. You have the right to comment on your care and have your concerns addressed.
(You can give feedback, both positive and negative, about your healthcare. If you make a complaint, you can expect that healthcare services will deal with your concerns quickly).

The second problem (making sure your rights are taken seriously) is the toughest part.

Some self advocacy articles recommend taking a friend or family member with you, to either advocate on your behalf, or to prompt you and help you to self advocate. This is definitely the easiest way to get around the problem. Unfortunately, it’s not always possible to have someone there with you. Even if you have a friend willing to come to appointments – are they going to come over every time you have to make a phone call to a receptionist? Are they going to stay all night while you’re in hospital, and help you deal with the nurses? This is why it’s so important to learn to self advocate. It doesn’t mean family and friends can’t stand up for you, it just means you’ll be prepared for the times they’re not there.

Some people can be fierce lions when they are advocating on behalf of another person, but turn into timid mice when they need to stand up for themselves.

So what if I told you that when you self advocate, you are actually also standing up for someone other than yourself? If the doctor is rushing through the explanation of your test results, using big medical words you don’t understand, what do you think he’s going to do with the next patient? And the next? And the hundred after that? What if you said,

“I’m sorry, but you’re going really fast, and I’m getting a bit confused. Could you draw a diagram to explain what you were just saying about the different genes interacting, and write down the medical words so I can look them up later…”?

Not only are you going to better understand your test results, but when the next patient comes in and starts to look flustered as the doctor tells them about their diagnosis, perhaps the doctor will slow down and draw them a diagram. Because of you.

When you get to the hospital and they haven’t organised your pre-surgery IV saline (despite the doctor ordering it, and you reminding them when you filled out the booking forms): if you politely keep explaining (until they finally give it to you) that it needs to happen because of your Dysautonomia, not only are you going to have less complications during and after surgery, but maybe the next time a Dysautonomia patient comes in, they’ll better understand. Because of you.

But don’t just do it for others.
Do it for yourself too.

I want the medical system to look after my husband properly because I love him. Sometimes, I find it hard to remember that I deserve just as much care. I forget that I am worthy of a doctor’s full attention, of a receptionist’s time, of proper care from a nurse. I think the way we view dignity changes the way we advocate. When you believe that you are worthy of proper care, it’s much easier to insist that proper care happen. Think about what you would ask for if the medical system was treating your sister, your best friend, your spouse… then insist on that care for yourself.

Be your own knight in shining armour.
Your weapons? The ‘3 P’s’.

[1] Ponder: think about what self advocacy means, and why it matters… (that’s why I wrote this blog post – I hope it’s helped!)

[2] Prepare: find strategies you can use to help you self advocate
(See this blog post)

[3] Practice: both before and during situations (e.g. Using your strategies during role-playing with friends/family is a ‘before’ practice. Using your strategies during an appointment is ‘during’ practice).

xx S.

Important note:
This post is addressing the issue of people feeling too timid to stand up for themselves when it comes to their own medical treatment. This concerns me, because I know from experience that if you don’t make things happen in the medical system, you generally fall through the cracks. So I wrote this post to try and help.

But sometimes it’s not a matter of being timid or unsure, it’s just that you’re too unwell to advocate for yourself.

If that’s the case, I leave you with the following quote from my chronically ill friend, Ricky Buchanan: “I have to do my own self-advocacy and my hardest lesson is that it’s OK to be completely crap at self-advocacy sometimes. It takes a lot of energy, and we don’t have a lot of energy and it takes quick thinking and that’s super hard when you’re zonked! Sometimes I come out of an appointment and I didn’t ask the questions I wanted to ask and I didn’t get the answers I needed and it’s so EASY to want to just beat myself up for it…but I [do] the best I [can], and I’m trying to be gentle to myself about it”.