Advocating For Care You Need And Deserve | #SpoonieSpeak

Advocating for care you need and deserve can be hard. Particularly when you live with a chronic illness. Unfortunately, most of us find that in order to get the right care, we have to spend a lot of time advocating for ourselves. There are many different things we have to advocate for. To be taken seriously, to get the treatments we need, to be suitably accommodated for and many other things. Advocating for care I need, has been a steep learning curve. So I wanted to bring the #SpoonieSpeak community together to share tips and strategies to help us in our advocacy.

The ‘Advocating For Care You Need And Deserve’ chat took place on 27th January, hosted by the @SpoonieSpeak twitter account.

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Q1. Have you ever had to advocate for yourself in regard to your health?

When I set this question, I figured that the answer for most people would be ‘yes’. But I thought it was a good starting place for people to get into the topic and would allow people to share anecdotes if they feel comfortable to.

Q2. What steps did you have to take to advocate for yourself?

My aim for this question was to give those with less experience advocating for themselves, or those who haven’t had to advocate yet, some ideas of where to start if and when they need to. I also hoped that those who are seasoned advocates would be able to pick up ideas to add to their repertoire.

Q3. What do you find hardest about advocating for yourself?

Advocating for care is hard. It’s important to acknowledge these difficulties. Partly for our emotional wellbeing, and partly so that we can come up with ways to make them a little easier.

Q4. How do you get around or minimise these difficulties?

There are many different ways to make advocating for care easier. But when you’re in the middle of a healthcare battle, it can be hard to see them. I like to try to put things in place before they get difficult. Sometimes this isn’t possible. We can’t see every eventuality and plan for it. When I come across situations that are difficult, I like to reflect on them (usually once they’re over and I’m in the right mind frame). This allows me to come up with ideas to minimise difficulties next time. Sometimes it’s not possible to minimise difficulties and that’s ok. I find having a good self care routine, can make all the difference in keeping me in the right mind frame to deal with things.

Q5. Do you have anyone who can help you advocate if needed? If you do, how do they help you?

I used to feel embarrassed that, at the age of 30, my Mum still came to most of my hospital appointments with me. However, the past 9 months or so have changed my view of this. My memory is poor. So I need help remembering what consultants are saying to me. The plans they are putting in place and the outcomes they hope to see. While my husband is in a better position to aid my memory when telling doctors about how I’m doing, my Mum still does a really good job.

But it isn’t just my memory that my Mum helps me with in appointments. She helps me challenge doctors when I’m able to, and takes over when I can’t. When I first became poorly with my basilar type and hemiplegic migraine, my Mum was the one advocating for care. After all, I was only 11. I’ve learnt a lot from her and am now able to put much of this into practice – when I’m well enough.

Chatting about advocating for care you need and deserve with the#SpoonieSpeak community has been great fun.

Next week’s topic is Passing The Time In The Waiting Room. We’d love it if you could join us!

Missed last week’s chat? Check out the Explaining Your Illness To Others chat highlights.

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