Sunday, May 05, 2013

Thoughts from my weekend in Auckland with Arthritis New Zealand

I've just returned from a super inspiring weekend in Auckland, attending an advocacy training workshop run by Arthritis New Zealand. Prepare for a lengthy post!

I was aware after I started Humira and almost all of my pain symptoms stopped that I lost a lot of enthusiasm for attending our Super Young Arthritics of New Zealand support group meetings. I felt like people who were still in constant pain wouldn't be able to relate to me anymore, and being able to move around freely while others in the group were often unable to walk unaided made me feel almost like I'd be rubbing it in their face. I've slowly been realising that's a stupid way to think, and this weekend has really brought home how much I can help and that I can probably do even more for people than I could have when my own condition was at its worst.

A few of the other people there also have ankylosing spondylitis, and for one of them it's quite evident that they are unable to move their neck. I initially sat there feeling quite emotional, thinking that if it wasn't for how successful Humira has been in treating my condition over the past few years I could easily have ended up the same way. It was pretty incredible that when I said that to Sarah later in the day she said 'bro, that's exactly how you were before Humira'. I knew my movement had been limited but to hear that it had been so visible was actually pretty shocking to me.

We learnt a lot of skills around advocating for individuals; assisting people in coming up with their own plans for solving problems, getting effective treatment etc. It was interesting to learn about the distinction between support and advocacy too. For a lot of people I've met through SYA of NZ, they don't necessarily need someone to be working through their issues with them, but just want an emotional outlet, someone to tell their story to. For others, they do need that advocacy side of things. Something that stuck out for me during discussions was that advocating is 'helping people to find their voice rather than being their voice'.

We had MP Peseta Sam Lotu-Iiga speak to us yesterday about how to get local MPs' attention, and the kinds of things that will impact politicians and make them pay attention to your cause. I have an o‐kay knowledge of that side of things, but it was mostly inspiring for me to consider ways to really getting involved and take action, rather than just sitting around thinking about issues. Sarah and I had a brief chat with him afterwards and he's a really cool guy. Very engaged with social media and seemed really interested in our group.

Today we had media commentator/columnist Chris Trotter speak about a similar thing but from a media perspective which I was a lot more familiar with. One of the most important things I took away from today had nothing to do with training, but discussing Arthritis New Zealand's ad campaigns. There is this one I've embedded below that has been running on national TV for a while now about ankylosing spondylitis.

For me personally and for several other young people in our group, it seemed to be a very inaccurate portrayal of the reality of AS for many people; glossing over the months or years of experimentation with many different treatments before hopefully finding one that does work effectively to treat symptoms ideally without nasty side effects. I definitely felt like the ad diminished the harsh reality of living with chronic pain ‐ go see a doctor for some medicine, you'll feel good as new! And as someone who had to go through almost a decade from the first pain symptoms to finding an effective treatment, it made me feel like the struggle to make the general population understand how serious it can be at its worst would be even more difficult ‐ oh yeah, like that active race car driver on TV?

The reality is something we probably should have worked out for ourselves but hadn't really considered; that the funding for that campaign was from drug companies, and obviously they don't want people to know that their products are not a quick fix (I should point out that for all my ravings about Humira, I know quite a few people now who have tried or currently use it, and I'm the only one who found it totally effective literally overnight. It does happen, but for the people I know personally it's either been a gradual improvement or has not worked for them at all.) From Arthritis NZ's perspective, it greatly increased the number of people going to their GPs and getting referrals to rheumatologists which is fantastic. I just still feel that harder hitting campaigns would still encourage people to seek medical treatment. I wouldn't want it to be scaring the shit out people with worst case scenarios, but just convey how serious it can be and the huge impact it can have on people of all ages.  It was great to hear acknowledgement that other appeal campaigns have been "too soft" and will hopefully improve.

I've been thinking a lot about the fine line between staying PC when raising awareness about arthritis (there was talk about not using the word 'suffering' for example) or not downplaying the strength of people who have the condition, and making people realise how serious it is. As Chris Trotter said (paraphrasing), people will think 'oh, they're not suffering? Well great, they're fine then!'

I've certainly been given a lot to think about, and I spent last night in our hotel room with Sarah, Keryn and Lauren drinking cider and brainstorming some pretty exciting ideas (I also haven't laughed so hard in ages). In two weeks I'm going to be on a panel with Sarah, Keryn and a few other young Wellingtonians, speaking to teenagers with arthritis. I had been looking forward to it, but am pretty excited for it now. I'm hopeful I can offer some kind of valuable advice for someone there, but also so keen to hear their ideas and needs. It's amazing how much has changed in terms of communication since I was diagnosed mid teens. There's so much work that needs to be done in getting diagnosed people aware of the support available but with Facebook especially it's a hell of a lot easier than when I was 15.

Slightly worse for wear this morning.

Anyway, we shot a few brief interviews with speakers so I'm going to start editing them while its still early. I have a really busy week at work coming up with our national conference so I better get as much sleep as I can.


Lauren said... Best Blogger Tips[Reply to comment]Best Blogger Templates

I'm glad you're doing a lot better but it is sad it's such a hit-or-miss with treatment for different people. x

PJ said... Best Blogger Tips[Reply to comment]Best Blogger Templates

Great to read - thanks. Would love to have been there, having arthritis & little kids to look after unfortunately makes it even more difficult to be involved.
Philippa Simpson

Krystal said... Best Blogger Tips[Reply to comment]Best Blogger Templates

this was so interesting to read, and its really cool that you are so active in this area.