I fundraised for my MRI. I guess you already know the outcome. It’s booked for January 24.
I hoped that I’d be able to fundraise enough to book the procedure. I thought it might take a few weeks, but I knew from the many voices urging me to do it that I had a lot of support. So, as difficult as it was for me to ask for help, I bit the bullet.
I did not expect to reach the MRI goal in four hours.
I did not expect to exceed it by more than double what I need.
I mean, that’s just – what are the words for that? The generosity is incredible. I was in shock for a few days.
It took me thinking about my other friends who live in pain to get my head around it. I thought about their suffering, and how much I wish I could do something, anything, to alleviate it in even in a tiny way. I’m not saying that was the reason people supported me – I’m sure there’s many reasons – but this’d be my reason to do the same.
Let’s be real for a second. (TW mental health).
Here’s a bit from How Does It Hurt?, describing the impact of chronic pain.
I know that many of you will understand this, because you’ve experienced it.
The reality is as Stephanie de Montalk describes. A “radical assault on language and communication” – which strikes at the heart of who I am. I do my absolute best to share my experience in the most authentic way I can. But this is what Stephanie has spent more than a decade researching. When someone asks me “How does it hurt?” – I rarely have words that would even get close to the answer.
In her 2005 essay ‘Pain’ Stephanie writes “It dragged and burned: a cat at the curtains, a coal smouldering; it needled like crushed glass; it radiated out and pressed down…”
That’s just the beginning.
This day last year, I was admitted to Respite after it became apparent that I was a danger to myself. I hadn’t yet been diagnosed with Ankylosing Spondylitis. All I knew was the pain. All I knew was that I had not the words, energy, or caring left to be able to describe it, name it, fight it.
I spent several days in the country, and returned stronger and with more hope.
A year later, I can say that strength and hope is stronger than ever. Having a diagnosis helps. But I couldn’t have done much with that diagnosis without you all. Your unrelenting support, so acutely expressed by the fundraising response, has been and will continue to be utterly fundamental to my ability to recover and fight.
As you know, I was looking at waiting at least another four-five months for the MRI. I’ve already been in pain for two years. I am at the end of the burning rope that is my spine.
The MRI isn’t a solution in itself – but if I get the “right” result – ie, it shows the inflammation pattern they expect to find – I could get access to a TNF inhibitor. These drugs are dangerous, expensive, difficult to access – and work for so many people.
My scan is booked for 24 January.
Thank you. Thank you to everyone who enabled this. The sense of relief and hope I have, knowing that it is on my horizon… Again, indescribable. In the face of pain that gnaws, claws, clamps, drags, and never gives me a moment to forget its presence and impact, it is utterly vital I can see progress. It is utterly vital that I have milestones to mark and look forward to. You’re doing that for me.
The additional money will be used for doctor and specialist visits, medication and supplements, dietary needs, swimming, massage therapy, yoga, maintenance of my TENs machine, and possibly a new cane that doesn’t come from the $2 shop. I would also quite like to make a donation to the Red Cross in Nelson, as they drive me to all my medical appointments and this is such a hugely helpful service, for me and many others.
Thank you, again. I honestly have no other words.
Well done, keep up the fight and your hopes. I wish you the best of luck and success with the MRI and what comes after it in the new year.
I’m sorry. This whole post angers me.
There are SUCH CHRONIC ILL PEOPLE IN THIS WORLD. Believe you me, you are not one of them. Have you seen someone sick. Really sick? Someone who has 4 kids, single and dying of cancer with no support?
I’m fed up with your pity party posts, passively aggressively asking for sympathy or pushing your own cause in raising money or to get something for your financial benefit. You have even admitted to refusing to speak to an organization about your story to raise awareness (about God knows what) yet become very vocal when you need cold hard cash or upgrades on international air flights. The “pain” in your spine only became apparent after the recent diagnoses of Ankylosing Spondylitis. It was’t until this diagnoses was made did you constantly make daily comments about spinal pain. Before that it was generalized pain. Never specific spinal pain. Some of your Twitter posts are hypercritical. You say you can’t sit for long periods yet seem to have a very active Twitter account, blog and columns. Are you not stationary for this? And then you make regular comments about how movement causes immense discomfort yet seem to have a very busy social life. Which one is it? The hypocrisy is blatant. Sick people would not be able to cope with this. In fact, sick people would not even be able to be barely cope with basic every day activities.
My true frustrations lie with this (which I know your little minions will disagree with and write nasty, backlashing comments to; unless this post gets deleted before hand). Specialists are there to assess how urgent these tests like MRIs are. As a NZ health care worker I can guarantee that yours was not in an urgent “category”. Yet you has started a FUNDRAISER to raise money so you an get a scan earlier. This pisses me off. Immensely. What makes you so special compared to these 400+ other patients out there who are really suffering and have to wait through the system like everyone else? Wait like the rest of the country. Don’t expect handouts to get something that an expert has deemed non urgent. I find this completely manipulating and unnecessary. And it invalidates people who really are suffering from terrible illness that have to fucking wait like everyone else.
So no – your picture depicting you beating a dragon is not how I, a random person who is a regular reader of your posts for over two years interprets you. Here’s and idea… With the extra few thousand you raised for your MRI, why don’t YOU donate it to those of your dear fiends who you know that are sicker than you and need financial help to lesser the emotional stress.
So, whilst you are enjoying your fun filled time in Austrlaia, I can’t pay my mortgage next week because my husband died two months ago and I’m without an income. I have three children who I can’t buy Xmas presents for. I have just been diagnosed with oesophageal cancer after having half my bowel removed 2 years ago. Should I start a “Give a Little” cause? No. Because I have pride and I know there are worse off than me. Merry fucking Christmas.
No one is stopping you from seeking treatment privately. Your resentment towards others really clouds your view. I feel sorry for you, for having so much rage towards someone else. If this blog causes you so much angst, perhaps you should delete it from your bookmarks, for your own sanity.
There is nothing wrong about asking for help.
Obviously things are not going well for you and for that I am immensely sad, but attacking Sarah because a) she asked for help and b) is trying to make the most out of what her body is going through is neither good for her nor for you. I hope things perk up for you, and that you have the graciousness to say sorry to Sarah.
Supagal: If anyone’s to blame for your predicament, it’s not Sarah. It’s Alan Gibbs and his old boys network who’ve attempted to foist an American-style managed care structure on the NZ health system.
What a sad, pathetic comment.
We have the option of private healthcare in this country for a reason. I pay for Southern Cross healthcare, because I’ve had the unfortunate experience of dealing with the wait times of the public healthcare system. Guess what. If people didn’t want to give Sarah a “handout”, as you so politely put it, they are under no obligation to give her any money. People chose to give her a gift so she could get an MRI earlier, through private healthcare — therefore EASING the strain on the public health system. Honestly, I wish more people who could afford it would get private health insurance or pay out of pocket for private healthcare, and leave the public system freer for people who need it.
As a “healthcare professional”, you should know better than to think you can diagnose someone over the internet. How on earth can you sit behind the anonymity of your keyboard and unilaterally determine that Sarah isn’t unwell? If you’re qualified to diagnose people, you should know what a terrible idea it is to diagnose people online. If you’re not qualified to diagnose people then… you cannot determine that Sarah isn’t really sick.
I’m sorry to hear about your husband. And I’m sorry to hear that you’re unwell. However, spewing vitriol at someone over the internet is not going to help you pay your bills, and it’s not going to make you better. It’s just going to fill you with rage and poison.
Supagal – just because there are others worse off that you, that doesn’t make your pain invalid. You are obviously having a really rough time and you have my sympathies.
I’m not sure how ranting at another person in pain will ease any of your problems, though. You may not realise, but by going private, Sarah is actually lessening the load on the public health system, meaning others do not have to wait as long as they otherwise would. It’s a shame private healthcare is not an option for more people.
You may not want to, and that’s understandable, but there’s nothing to lose by doing a givealittle campaign. I’m sure there are many friends who would like to help you and your children. It’s not a loss of dignity to allow others to help you and your family in a time of need. A lot of friends would probably appreciate the opportunity to help you, because donating money to people is not an easy subject to broach.
Best of luck getting well, and I hoep you managed to have a nice Christmas with your kids despite the challenges you’re facing.
This comment by “supagal” is so shocking and sad, as it shows how the governments we have recently had in this country have succeeded in dividing people, and to stir them up against each other, so we now have sick and disabled compare the severity of their conditions, instead of looking at improvements for all.
We have so much division, lack of trust, of even hatred, it sickens me what has happened to this country, that is no longer the place I once came to as a migrant.
The issues are not simply individual rights, they are the lack of social awareness, social cohesion and a preparedness to work together and share.
I fear it will take a long time and a lot of efforts to turn things around again, and to make people respect each other again.
My advice to critics is, stand in front of the mirror and reflect, and also consider whatever you do and think and say, whether it is really happening in an independent, unconditioned state of mind. I fear so much is not, and many will be advised to reflect on their personal views and behaviour.
Good luck and best wishes to all that suffer illness and disability, at whatever degrees, you do ALL need more understanding and true, fair help and support.
It looks like you’re having a rough time of it yourself. I’m sorry for that.
Sarah isn’t doing anything wrong and I know it’s sometimes easy to lash out because you’re in a shitty place but please don’t do that to Sarah, it’s not fair. Your situation isn’t fair either and I’m sorry for that as well.
Kia kaha, I hope something comes up to brighten YOUR day soon.
Sarah let’s keep the focus on what you need and your journey, that’s all we need to do right now. Xx
— “What makes you so special compared to these 400+ other patients out there who are really suffering and have to wait through the system like everyone else? Wait like the rest of the country. Don’t expect handouts to get something that an expert has deemed non urgent. I find this completely manipulating and unnecessary. And it invalidates people who really are suffering from terrible illness that have to fucking wait like everyone else.”
But not everyone else has to wait. Anyone who has access to sufficient private health care would be able to get a “non urgent” MRI. What makes someone born to rich parents so special? There may be problems with how our health system works, but that’s not Sarah’s fault. [That said, and I really don’t mean this to come across as patronising but it might, I am very sorry to hear of your own situation and wish you the best.]
Check out kickas.org. The NSD turned my life around (had AS all my life). I’m surprised enbrel is difficult for you to get, although it took me 9 month in Nelson. All the best
Sarah, like Supagal, I have followed your blog for some time but have developed a growing unease about your motives as there is much that seems inconsistent. Firstly considering your treatment by Winz which you have written about extensively. There are many horrific cases of vindictive and highly illegal treatment by this department, but you are not one of these cases. What you have experienced is just the usual crap routinely dealt out by this department that all beneficiaries unfortunately have to deal with. Yes, of course you shouldn’t have to put up with this, and the policy of forcing ill and disabled people to seek work is cruel and heartless and this policy should be overturned, but you are not a special case, but just one of many people forced to bear with this whole rotten business.
It seems your treatment by the medical profession has been remarkably helpful and benign compared to what a person in your circumstances typically experiences. This of course how it should be, but is usually not the case for people with mental health issues. Believe me, doctors often make value judgments about such people, the way they are often treated is appalling, and their physical ailments are typically ignored or written off as part of their mental health issues. You have been very well treated by the health system compared to many people, and you should be grateful for this instead of holding your hand out for more special treatment.
Previously you have stated that you consider it “a massive goal in your life to be the most authentic, compassionate person you can be”. This is the crunch issue, and I am sorry, but I have to blow the whistle on this one. You have described your mental health issues as depression, generalized anxiety, and post traumatic stress disorder. At least one of these does not fit, and something is missing. Mild depression and anxiety can be accepted, but these cannot be too serious or you would not be doing the activities you describe. PTSD, no, the symptoms you present with are not those of PTSD. What’s missing then? Let’s consider some of the symptoms and behaviours your previous blogs have described. Episodes of self harming behaviour. Periods of intense emotion which you feel unable to deal with. Your blog of a few months ago in which you demand people stop offering you help and gifts because you cannot emotionally handle this, is a graphic description of such an emotional state. Responses to situations that are a huge over reaction. Your anger regarding Giggle TV and a quite innocuous coffee advertisement are some of many such instances. Instability in personal relationships, particularly with the opposite sex, whom you often feel have hurt you badly. This all describes a classic case of Borderline Personality Disorder. The therapeutic techniques you have described were in fact specifically developed to treat BPD.
BPD is overwhelmingly a female disorder, and it is a common feminist argument to attribute the symptoms of BPD to PTSD to attract sympathy, avoid stigma and to cast themselves in the role of victims, not perpetrators of abuse. This is harmful to the real PTSD sufferers and very dishonest. Unfortunately borderlines often cause much suffering and profound long term harm to their families, partners, and fellow employees, so it attracts little sympathy.
There is a subtle suggestion in your writing that something is very wrong within your family and they have harmed you, but this seems inconsistent. I understand you live with your younger siblings, and your older brother has just paid for you to have a holiday in Australia with his family. No problems there apparently and it seems they care about you. You had another Australian holiday with your mum about two years ago so there can’t really be a problem with your parents. The reality for some people in dysfunctional families is no emotional or material support, and emotional abuse and physical violence are common. You have not experienced this type of abuse, but you seem to believe you are a victim.
When you were writing and talking about your problems with Winz in obtaining special allowances for medical expenses and dietary needs, one of your first actions on receiving this assistance was to blow the money on a tattoo. If you want to have what is usually regarded as an act of self disfigurement done, that is your right, but you have absolutely no right to demand extra support from the state if this is how you use the money. You seem to have had a number of trips around the country recently, and you also had a large veterinary bill. The money to pay for this must be coming from somewhere so clearly you are receiving financial help from other people, despite your previous assertions that you don’t want help. You see Sarah, the reality for most people with chronic illness and disability is that money is very tight, there are no luxuries, holidays, or recreation activities, and often there is no money to pay for essential health care. There is usually little sympathy for them, and often no support from other people, yet most bear with it stoically. So you must understand Supagal’s anger when you consider yourself a special case and constantly appeal for sympathy and financial support. Making a public appeal for extra money to advance the date of your MRI is dishonest and manipulative when you already receive such assistance but use it for frivolous purposes. This must inevitably anger people and undermine your credibility.
So what’s it really all about? Is your blog, twitter page, and media column just self serving, or do you really want to help others in similar circumstances to yourself? With your public profile and media contacts you are in a position to help others by bringing to public attention the real suffering caused by current government policy and the frequent unlawful excesses of Winz and other branches of MSD. There is also much that needs to be done to change the mental health system, and you could help there too. So Sarah, I ask you to consider these matters, and to transfer your efforts into helping your fellow beneficiaries. I am sure you will find it the best possible therapy. Who knows, you might just become a real heroine, not a just a comic one.
You’re a piece of human garbage. Who comes onto a blog and armchair diagnoses somebody with a mental illness? Well done for completely missing the point of her blog. Please remove yourself from the internet immediately, you clearly can’t handle the responsibility.
Thank you, random internet guy, for supplying your obviously qualified diagnosis with aplomb and sensitivity.
Now, please take your abusive concern trolling and diagnoses elsewhere, preferably nowhere. The world, particularly our host, does not need this unqualified commentary.
The only “dishonest and manipulative” person here is you. You claim the ability to diagnose BPD – but you use rational reactions to chronic pain, as well as “normal” human interactions as your basis for your fraudulent “diagnosis.
You Started by telling Sarah that being mistreated by an agency that is supposed to help New Zealanders doesn’t make her ‘special’ – so why do you attack her for being brave enough to talk about it?
You should seek help for your issues. If you choose not to, go fuck a cheesegrater.
Hi Dr Phil,
Thank you for your expert analysis of this stranger on the internet. Perhaps you can help me with a similar situation.
I once saw this guy who took the time to write 1066 words giving an unwell person shit on the internet. It wasn’t a throwaway comment – he had dedicated serious time and mental energy to doing it. What are the variations of psychopathy that might be involved in this individual? If you think about all of the things he could have done with that effort, do you think he consciously chose them in favour of being a bit of a fuckwit, or was the action like an extended 1066-word involuntary tic?
I look forward to your diagnosis.
Again, hello “Phil”…
As a friend of Sarah’s, and a health worker, your post has left me appalled not to mention a little fascinated with the sheer volume of thought you’ve put in to crafting it. I have a few things to chip in…
Anyone could argue that ‘x’ does not represent a “special case” with respect to ‘y’ in terms of treatment by WINZ. Sarah has never courted or flaunted special case status, but has shared her experience and it’s impact on her day to day life in such a way that other’s feel they can also. Her experiences shine a light on something that so many of us have not experienced, yet can benefit from knowing. Someone with a sense of being a “special case” would simply not bother to do this.
You talk of Sarah’s treatment in the health system as being “helpful and benign”. I’m at a loss to understand exactly what this means. Again, you trot out an example of Sarah being yet another person at the mercy of a large, lumbering system. I can only assume that “benign” treatment means that the system has done Sarah no undue harm, which is something we should all be grateful for. As for your allegation of special treatment – I fail to see why someone receiving help from friends who genuinely care for a person is something to get upset about. She requires a diagnostic MRI to direct further treatment. This is readily available to people who can pay privately, or who are insured. The fact that a crowd of friends made this happen is to be celebrated, and wouldn’t it be wonderful if other’s were more comfortable asking for help in our individualistic, “pull your socks up & get on with it” society?
The most disturbing aspect of this post is the obvious time and effort you’ve taken to build a “case” for diagnosing Sarah with a personality disorder. It is true that PTSD and BPD can (emphasis on that last word there) share similar aetiologies, and similar therapeutic approaches may be used to treat them. This aside, I shouldn’t have to say that you have no right to shamefully speculate regarding Sarah’s developmental or family history. I can see no other reason to do this other than to cause hurt and potentially, further trauma. Your use of the descriptor “borderlines” demonstrates a profound ignorance about the experiences of BPD sufferers. This is surprising given your aformentioned knowledge of mentally unwell peoples’ experience of the mainstream health system.
What I hope, Phil, is that you’ll eventually learn that comparing apples with oranges doesn’t get you anywhere. That no matter who is in government, communities can support those in need, and do so in a powerful and positive way. Sarah is a powerful female advocate, and her bravery in the face of people like yourself never fails to inspire me. If you’ve come here in the hope of shutting this warrior woman down, I think you’ll be sorely disappointed.
Hi Phil, just dropping in to share my condolences. Don’t worry, we’ve all been terribly, horribly wrong before. You’ll eventually come to terms with the shame of having been really far off the mark, compounded by being the kind of arrogant that makes others cringe. Keep going little matey, but not here, where you’re thoroughly unwanted.
You’re giving blokes called Phil a bad name. Rule #1 is, Don’t Be A Dick. Try it sometime.
As someone who actually has BPD (diagnosed by a psychiatrist and everything), your comment is offensive and just plain damn wrong.
1) There is no feminist argument about BPD being attributed to PTSD. You’re making that up (and I’d like to talk to any feminist who actually believes that). They are completely different disorders. Some symptoms are similar but they are not the same. Treatments can be similar (often BPD is treated with DBT instead of CBT though) but they are not the same thing.
2) The stigma that goes along with BPD is because people like you decide it’s the catch all for any unexplainable mental illness. Believe me when I say, it’s so hard to be open about it because of people like you who spread these incorrect and vicious lies.
3) I have the love and support of a huge amount of friends and a wonderful family. Yes, I am sure that I have hurt them in the past but I’m equally sure that they have hurt me. It’s the way that friendship and family work.
4) I’ve met Sarah and know her pretty well as a person. I can tell you she definitely DOESN’T have BPD and given that one of us here has it and it ain’t you, one of us is a heck of a lot more qualified to talk about this than you are.
I suggest that next time you decide to espouse your opinion, you back it up with scientific fact instead of your opinions which quite frankly, aren’t worth the internet space that they take up.
How’s about you keep your shitty, mis-informed & harmful opinions to yourself? If anything Sarah is extremely reluctant to accept financial help, and it took a great deal of strength for to ask for it when it came to her MRI.
As for your opinion that her trouble with WINZ is just something she should put up with, that’s the sort of pathetic cop-out that allows MSD to continue to trample over the rights of people.
Please crawl back under the rock from which you emerged.
Phil, you have crossed the line here with your reprehensible behaviour.
Your comment and your behaviour goes past rudeness/trolling and into being threatening. You’ve taken the time to trawl through the information that is on Sarah’s blog, twitter, etc, and document several years of Sarah’s life – which I’d have no hesitation to class as stalking. You have no right whatsoever to threaten Sarah’s safety in this way.
It is behaviour like this that forces vulnerable people offline and away from their support networks. You are making this place unsafe to all those people who Sarah supports through her online presence and advocacy work – those exact people that you accuse her of not helping enough.
Furthermore, you clearly paid no attention to the replies to Supagal. As was pointed out there, you can’t diagnose people over the internet, and doing so is an awful way to interact with anyone.
You clearly don’t care about the effects of your actions. You are threatening and are not welcome here. Go away.