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.

Magazine

Thanks Mum and Dad for scanning this for me... I was too forgetful to take it into work. (Click to enlarge).

Super Young Arthritics of New Zealand Facebook page.

Alcohol, in summary.

I've had a great end to the week with my friend Sarah coming to stay from Tauranga for a few nights. Sarah used to live here in Wellington but moved away last year, so it's always super exciting to see her. She's the first young person I met with a form of arthritis, and we've become great friends. On Thursday we held a long overdue meeting of the Super Young Arthritis group at Southern Cross and it was great to meet a few new people. Technically I guess I'm the person who should arrange our meetings down here, but you guys know how much I suck with strangers! Will make a bigger effort in future though I think, because I know how much the newer members appreciate meeting others who understand what they're going through.

Last night (Friday) we went out for dinner with a bunch of Sarah's friends at Hog's Breath. Their meals are insanely huge, and I was stuffed after eating only some garlic bread, mushrooms and mashed potato! Afterwards we headed over to Mac's Brewery and watched Australia beat Wales for third place in the Rugby World Cup, on the big screen there. I have little interest in rugby (though I'm looking forward to the grand final tomorrow night) so went along with what seems like the rest of the country in supporting Wales. For some reason everyone I know adores Australia, and a large number of us New Zealanders have already migrated there or dream of doing so. But when it comes to sport, we'll generally support any nation coming up against them. It's pretty bizarre. After the game we went to a bar in town for a couple of hours, and got a lot of sympathetic looks at our Wales flag facepaint haha.

The SYAOW meeting, with 'representatives' of a bunch of autoimmune diseases including ankylosing spondylitis, rheumatoid arthritis and lupus.

Don't cripple your future with limps from your past.

I have meant to write this post for a long time, but have just never got around to it until now. Prepare for a long one! As long time readers and people I know in real life may be aware, I have ankylosing spondylitis.

Ankylosing spondylitis is "a form of spondyloarthritis, is a chronic, inflammatory arthritis and autoimmune disease." Yeah, thanks Wikipedia! Don't worry, that doesn't clarify a whole lot for me either!

What does it really mean?

For me, it started one evening when I was around twelve years old. I got a deep, burning ache in my hip that wouldn't go away. It turned into a sharp pain when I moved, and didn't lessen whether I was standing, sitting or lying down. My Mum ended up taking me to the emergency department in the middle of the night, and from what I recall within a couple of days they had tentatively decided I'd dislocated it, and gave me some crutches and painkillers. Over the next few years I had various pains- most frequently in my neck, knees and hips. For a while it was dismissed as growing pains. I can't remember now exactly what age I was when I was given an official diagnosis, but eventually I had a few blood tests and it was decided I had the same arthritic condition as my Mum.

Throughout my teenage years, my symptoms got worse and worse. I was taking around 20 pills per day for most of that time, and they were not making a huge amount of difference. I had monthly blood tests to monitor my inflammation levels, and the effects the various medications were having on me. I was one of those girls with a note to get out of PE class most of the time, and I found that the most frustrating thing was how one day I could be crippled in pain, and the next I could quite easily participate in games. How were those of my peers who didn't know me very well going to understand that? And being an awkward embarrassed teenager, most of the time I didn't really want to go around explaining that I had a disease associated in most people's minds with grandmas. The shame! Pretending to be a lazy 'cbf' kind of PE student proved to be a lot easier than being accused of faking my pain (a rare occurrence, but I do recall it).

In my final year of high school I had a huge amount of sick days, and also had a couple of stints in hospital having intravenous steroid treatments.

Fast forward a couple of years to 2009, and my symptoms had become a daily battle.

I had to sleep flat on my back every night, without a pillow. Every morning I woke up with my back feeling frozen in place. I have metal bars in the headboard of my bed, and getting up in the morning literally meant reaching up with both hands, grabbing the top bar, holding my breath, bracing myself, and hauling myself into a sitting position. My back and hips would usually audibly crack, and I'd be left sitting in bed, trying to catch my breath, and prepare for the next step of actually standing up and making it to the shower.

For at least two years, and probably even before that, I couldn't turn my head more than a few inches in either direction (nowhere near as far as my shoulders) and I couldn't touch my chin to my chest.

The final straw was when I had a 'flare up' in my tail bone, which lasted at least a year. If I sat in a chair for any longer than five minutes, I either needed something to pull myself up with, or assistance from someone. Sitting on the ground was never an option. Pain of any kind is always difficult to describe, but I remember it feeling as though a hammer had smacked me right on the tailbone (glorious mental image)- a horrible, deep, broken, bruised kind of pain. Despite my existing diagnosis, I had x-rays to see whether I had in fact broken it- nope. The possibility of having an operation to remove my coccyx was discussed as a last resort option.

And then... breakthrough! My specialist put me through the application process to get Government funding for a drug called Humira, which was swiftly approved. The drug is administered via injection- an EpiPen. I did my first treatment myself, with a nurse's supervision, and left with a three month supply- one EpiPen every two weeks.

The next morning after that first injection, I woke up and literally jumped out of bed- it worked in less than 24 hours for me. Being a total girl, I promptly burst into tears and called my Mum- it was a fucking amazing day.

I have been completely pain-free for over a year now, and have had no serious side effects to the drug. The drug itself is absolutely no picnic- it's an incredibly sharp sting, but it only lasts ten seconds. I haven't been able to bring myself to self inject with the EpiPen since the first time with the nurse- Charlie (or occasionally my Mum or friend Sarah) gives me the shot in my thigh once every two weeks, with me clenching my teeth and being a drama queen. But it is so sooo worth it, I can't even begin to tell you how much my life has improved.

I still have the disease, and the damage already suffered by my joints will not go away. But my pain is gone, I can twist my neck and look behind me without turning my whole body around, I can sit on my office chair at work for eight hours a day and still be able to function afterwards, and I can sleep on my stomach again- a luxury I didn't know I had until it was gone!

I don't know what will happen in the future- for now I'm just hoping Government funding for it will continue forever really. The drug costs around NZ$2000 per pen and it's really sad knowing American people on Facebook who are having to fund raise to try and get this drug which I can get so severely subsidised for just a few dollars. I feel extremely lucky.

Join the Super Young Arthritics of Wellington Facebook group here. Anyone in the world is welcome to join, but for Wellingtonians we meet up periodically for beers.

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.