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.

Arthritis New Zealand Annual Appeal rant

Edit: According to Google Analytics I've had a few hits from people Googling "arthritis" "New Zealand" etc. If you wish to join our Wellington-based Facebook group you can do so here. All welcome.


You may or may not be aware of the fact that I have ankylosing spondylitis; an autoimmune disease with a ridiculously long-winded, tongue-twister of a name, and a depressing list of symptoms and outlooks. AS is a form of arthritis that mainly affects the spine. I was diagnosed a number of years ago now, and had my first symptoms of it around age 12.

At some stage I will definitely write a post on my personal experiences as a juvenile arthritic, but today I'm just writing my opinion on this TV advertisement for Arthritis New Zealand, and their annual appeal week which finishes tomorrow.

This year is the first time I'd seen it, though according to the YouTube upload it was also used last year. A trio of NZ "celebrities" fumble around in bright orange, over sized gloves, attempting to demonstrate the restrictions arthritis causes its sufferers.

Firstly, the elements of this ad that I commend are as follows:

• The use of locally recognisable celebrities
• Featuring Geraldine Brophy, who has arthritis herself
• Having a TV advertisement in the first place

However, that's pretty much where my praise ends.

I knew what arthritis was even as a small child, even though I wasn't aware that my own Mum had it (I'm talking primary school age). I recall the term being commonly used throughout my early years among my peers, "Don't crack your knuckles, you'll get arthritis!" We may not have known the finer details of the symptoms or causes of the disease, but we were all perfectly aware that arthritis was pain inside the joints of a person's body.

I personally don't think that the general population needs any eduction as to what arthritis is, on surface value, which is all this ad really covers. I don't imagine there's anyone in the country who doesn't know of somebody affected by it, and therefore knows the basics of what it is. However for the majority of people it will be an elderly relative with osteoarthritis, which is incredibly common, affecting almost all of the elderly population; a progressive breakdown of the joints. Elderly are already considered old and slow, and if I didn't have my own experiences with a different type of the disease, then I imagine I'd be quite oblivious to the degree of pain these elderly people are suffering from.

I don't like the advertisement's focus on the physical restrictions of arthritis, and the emphasis on the hands. This point is all very well outlined in Helen's blog post here:

"For one thing, these ads have absolutely no mention of pain. Personally, I have almost full function of my hands, but that doesn't mean that they are not extremely painful. Yes, arthritis does sometimes make my hands fumbly. There are times when I can't do up zips or find using a knife and fork difficult but this is a minor irritation compared to the long list of other symptoms and difficulties that come with the disease..."

"Then of course there is the pain and the things that go along with constantly being in pain. Lack of sleep, inability to concentrate, general exhaustion and floods of emotion..."

"Too many people already think that arthritis is just something you get in your hands..."

Lastly, I am irritated by the missed opportunity that could have been provided by the young celebrities. Where was the "I'm Drew Neemia, and arthritis affects people MY AGE"?

I realise there are two separate issues that Arthritis New Zealand supposedly advocate: the plea for support in the form of donations, and the plea for support in the form of public awareness and understanding. I just absolutely believe that this campaign could have achieved both to a greater degree if more emphasis was put on the how and the who, rather than just the what.