On Sunday it’ll be one month since my PIP form arrived at the DWP. I thought I’d celebrate by calling them on Monday to see if they actually received it (as I’ve not had the “You didn’t send your form back” letter but I also haven’t had the “we’ve got your form and we’re going to put it in a large pile for the next six months” letter). So we’ll see how that pans out. Prediction: it’ll be painful.
Up until last week I’d pretty much only been thinking up to my rheumatology appointment, like it was going to offer me all the secrets of being able to function again. In the end, the appointment was a little underwhelming and now I have to think about what to do next. My long-term goal, however, is that I want to go back to work. Now because I’m not *completely* stupid, I’ve realised that my ability to work may not be as it once was. I love my job, however, and I’m willing to do whatever I can to try to get back to it.
One option to help me out in this is the Access To Work scheme. Once a very effective way to give disabled people the support and equipment to help them have a career, now a long list of things you’re no longer allowed to have. Good luck finding a way you can be supported by the scheme if you need a specialist desk, chair, computer equipment or office equipment because they now no longer supply these. So, in a perfect world, if I wanted to go back to work tomorrow, what would I need?
- Someone to drive me to work and back. I live an hour’s drive each way from where I work. In order for me to still be able to work once I get there, I’d need someone to do the driving for me. Also, if I wanted to be pain-free while working I’d have to take painkillers, and I’m not fond of driving on painkillers.
- A way to get around while I’m at work. Maybe not completely essential – I could run my youth work sessions sitting in a chair all evening, if I really had to – but it’s difficult to take charge of a group of young people when you can’t move around.
- Someone to help with the lifting and carrying. I’m self-employed,my office is my spare room. I’m a youth worker, I use a lot of resources. When I’m working, the back of my car is normally full of them. As I’m currently not able to lift anything heavier than a small cat, some help carrying and moving boxes of resources would be needed.
And that’s pretty much it. Not a lot, but if I had that I could go back to work tomorrow. Literally. However. From reading accounts such as BendyGirl’s attempts to access the ATW scheme, I know full well that I’d probably have a full recovery from my chronic condition before anything like these support means would get put into place. I could get a job closer to where I live, and I’m in the process of looking into how I might be able to do that. But the project I currently work on I’ve worked on since 2007, when I started it. It’s about to go through a couple of years of MAJOR change that I and the community and the young people have put years worth of work into. Would you want to pull out of your job at such a crucial time?
No. Me neither.
I am *desperate* to go back to work. I have other projects and things up my sleeve that I can do at home while working really isn’t an option but I want to go back to work. The thing is, I don’t know if I’ll actually be able to. And it’s not because I can’t work – I can work! I have been working and I want to work again! But accessing my job is a lot more difficult now than it used to be. I hope I get some support, somehow. But I’m not holding my breath.
One of the biggest challenges faced by people who have chronic illnesses is that of being believed. Of being listened to by professionals, and finding people who understand that conditions like fibromyalgia, M.E. and so on are real, physical illnesses. After my encounter with the rheumatologist last week, I went back to a post that had been flagged up in the FibroME For Action Facebook community (link in the side bar) about the Barnet Clinical Commissioning Group’s pilot study in managing people with “Medically Unexplained Symptoms” (MUS). (more info here on the dx revision watch website)
This all sounds like a bunch of NHS jargon-speak, which it is, but essentially they were putting forward the idea that people with MUS (which they class as fibromyalgia, M.E, chronic pain, post-viral fatigue, CFS and “somatic anxiety/depression”) shouldn’t be referred on to secondary care (rheumatologists etc.) but should stay under the management of GPs . The purpose of this?
- “Reduced GP secondary [rheumatology, physio, OT etc] and tertiary [inpatient programmes] referrals.”
- “Reduced unnecessary hospital investigations and prescribing of medicines”
- “Reduced GP appointments and out of hours appointments to A&E or GP”
So, a pilot that’s designed to reduce access to specialists and prescribed medicines for people with conditions like fibromyalgia, M.E. and other chronic pain disorders . Well this can’t possibly go wrong.
This is clearly a cost-reducing exercise. But the NHS can’t just say “sorry, you’re just too expensive to treat” and needs to give some kind of reasoning behind their actions. Let’s start by having a look at how they describe those of us with “MUS”:
“Other terms used to describe this patient group include:…Bodiliy Distress Syndrome (BDS)”
Remember where we’ve seen that term used before? Our friend Dr. Fink, who considers these conditions to be mental disorders. So that’s concerning, for a start.
There’s another document here that goes into a bit more depth about exactly what people with MUS are like (other than “generally annoyed and in pain”, obviously). I want to highlight some choice quotes:
- “MUS cannot be easily ascribed to recognised diseases. They might be caused by physiological disturbance, emotional problems or pathalogical conditions which have not yet been diagnosed.”
- “More common in women”
- “Past health and psycosocial experiences may encourage some patients to minimise certain symptoms and over emphasise others to shift the doctor’s attention in a particular direction.”
- “Most people with MUS who see their GP will improve without any specific treatment”
This paints chronic illness patients as manipulative and hysterical. GPs are being told that anyone with an “MUS” doesn’t need to be referred to a specialist, that our symptoms are “emotional problems” and that we’re likely to try and manipulate our doctors to get what we want. Anyone who has been to a cynical doctor knows that sometimes, focusing on one particular symptom is the only way to get them to listen to you so you can get the treatment you need.
Here’s another quote from the same document:
“For MUS, good practice consensus recognises that not investigating may be best for the patient.”
The document recommends that to investigate – to give “credibility” to our pain and fatigue – is not good practice. This attitude belittles us, patronizes us and says “doctor knows best”.
Focus on managing symptoms rather than getting a diagnosis, don’t treat with drugs, saying that “a serious cause is unlikely”. This puts conditions like fibromyalgia, M.E., et al. under the “not so bad” group. And then we’re back to “just get some more exercise” as a cure.
This is dangerous. I believe this is an unsafe way to practice medicine. To tell medical professionals that when people come to their surgeries with medically unexplained symptoms, you don’t investigate to see what the problem is. This is why we are facing a massive lack of research into conditions like fibromyalgia and M.E. We are fighting a long battle to get the medical profession as a whole to treat these as conditions and diseases, rather than just a pile of “unexplained” symptoms. They’re being told it’s not worth their time, that it’s a waste of money and resources. That we are not worth the trouble. That, quite frankly, is appalling. Once again, it comes down to the tired, sick, exhausted and chronically ill to do their own research and fight the battle.
If you don’t look for a diagnosis but just manage the symptoms, people with chronic illnesses will go undiagnosed. They will not get the correct treatment. This is how we end up with people getting psychological treatment for a physical illness. Figures for the prevalence of illness will be inaccurate, and it will be very difficult to make the case for more research into these conditions.
I believe we need to be doing more research into these chronic conditions so we can find a cure for them. The attitude at the moment that “managing” the symptoms is enough. Please do read the documents I’ve linked to, I’m really interested in hearing other people’s views on what they say. And then let’s work out how we can change this.
Oh to hear the words that mean you finally have a diagnosis! Or rather, to be prodded for 15 minutes while you wear a hospital gown and have the rheumatologist say to you “yeah, it’s probably fibromyalgia”. Yey? I suppose? Well, I’m taking that as an official diagnosis as it’s probably the best I’m gonna get.
She seemed to think that fibro, CFS and M.E. were the same thing, which they’re clearly not. I’m not sleeping, I’m female, I’m overweight and I have pain. So, painkillers, sleep aid, get more exercise. Fibromyalgia as a stress/weight/being a female syndrome. Oh, also a nice leaflet from Arthritis UK that has this nice picture of some nice people meditating on the cover. Yoga and meditation for a cure. Yeah, no. I’m no expert, but I’ve read enough to know it’s not a “lose weight, take these pills and have a nice life” syndrome. It’s so much more than that. But there’s no funding for research, no-one wanting to look into fibromyalgia because it’s something that overweight women get so it’s not worth it. Eat better, exercise more, take pain pills. Repeat ad nauseam. Your illness is self-inflicted.
The unspoken words of “yeah it’s probably fibromyalgia” are “hey, at least it’s not something serious! At least you don’t have cancer, or arthritis, or HIV! At least you don’t have something we can actually see! You’ve just got something we have to take your word for, so y’know, it’s not serious”. It speaks volumes about how women with chronic illnesses are treated. Women aren’t seen as having high priority jobs – we’re all mums, or wives, or dinner ladies or nursery nurses or cleaners. Just pop some pain pills and you’ll be fine. You’ll get through. We’re not seen as executives, as researchers and CEOs and people who undertake “important work”.
A quote from the Kickstarter-funded film about M.E. titled “Canary in a Coal Mine”:
“There’s $16 million in Male Pattern Baldness. And we get $3 million bucks going for Chronic Fatigue Syndrome.”
Don’t tell me this isn’t a gender issue, because it is. Remedies for hair loss and research into Viagra get plenty of funding. Diseases that effect mostly women and can ruin their lives? Get very little. It is very much a gender issue. And the people who have to do the research are the women who are in pain, are exhausted and are looking for answers.
So my next step? Is to research. Research everything I can. Read everything I can and learn to understand it all because this is my health. No-one wants to become an expert in my health, so I’m going to have to. Those of us with chronic illnesses have to become our own specialists, because no-one else wants to.
I’ve felt ill for a while. I would say I’ve felt “severely” ill (that is, ill enough that it starts to effect my everyday life) since around November of last year. While I’ve felt awful, been unable to get out of bed and been unable to generally function in the world, I’ve never had any solid “here is a thing that says something might be wrong” apart from my own feelings.
Until today. It wasn’t anything massive – just a letter saying there was some elevated inflammation in my blood tests I had done last week (which left me with a wicked bruise, by the way). But this was the first, printed-on-paper thing that might tell me there’s something wrong. And my first reaction was “Oh, it’s probably only a mistake, they’ll probably find out it’s fine when they do the next one.” Isn’t that a strange reaction? I’ve been wanting something concrete to come up, to show that yes there IS something wrong, and as soon as something does I dismiss it.
We’re always taught to play down illness. “Oh I’m fine”, “Oh it’s nothing”, “Don’t worry about me!”. We don’t want to have to admit something might be wrong with us. Doing that almost feels like a failing on our part. Like we’ve been weak enough to allow something to happen to our bodies, like we’ve been silly enough to let ourselves get chronically ill. Like we weren’t trying hard enough. On the flip-side, there’s the “Stop moaning about it”, “just get over yourself” aspect of being ill. If you ARE ill, you need to do it quietly and not go on about it. We’re told to play it down, pretend nothing is wrong, make light of the situation.
But, I am ill. I can’t change that. Playing it down isn’t going to do me any good. It’s not going to make me get better. It’s really difficult to accept that something might be wrong. But not accepting it isn’t going to help anything.
I have my first rheumatology appointment in two days. It’s the first step on the road to a diagnosis. It’s scary to admit that something right be wrong, but it’s necessary.
* 6am: Wake up Realise you hurt but you can’t take your pain meds yet or they’ll wear off too soon. Put on Radio 4 Today programme. Browse Twitter. Go back to sleep around 7.00am
* Between 8/9am: Wake up again, . Vision is fuzzy, whole being is fuzzy. Realise that your pain receptors are waking up and lie in bed awaiting inevitable.
* Between 9/10am: Get out of bed Realise getting up this late makes you dirty scrounger, decide to open living room curtains to show neighbours that you are up, even if you and husband still can’t get out of PJs or bed.
* Make breakfast. Make coffee. Take meds. Do all of this before pain truly kicks in because you have to eat and if you don’t do it now you never will.
* Switch on computer at desk, as sitting at desk makes you feel productive and like you’re achieving something. Plus you can only sit at desk during your most awake/pain-free hours of the day, which is now. Browse Twitter, read blog posts, work on bits of work you’re doing. Feel accomplished. Feel intellectual. Feel like you’re fighting against benefit scrounger rhetoric!
* Feel slightly less accomplished when you realise that, in a Before Illness (BI) world this was your least productive time of day as you are not a morning person. Reflect on how your perception of “productivity” has shifted. Realise you haven’t showered since last week and haven’t changed your pyjamas in three days. Reflect on how your perception of “cleanliness” has shifted. Drink more coffee.
* Noon: Realise fatigue is kicking in. Realise it just took you five attempts to type “realise”. Realise your legs/arms/back are starting to hurt. Realise that you’re now sitting at your desk in a slightly sideways slumpy way. Moan about the fact you can only take your medication twice a day and you’re not allowed any until dinner time. Grumble.
* 1pm: move laptop to sofa/bed as you can now no longer sit up in chair due to pain. Have maybe another half an hour on computer before your brain goes “nope, not happening”. Realise your fatigue is too much for reading/watching tv/doing anything except lying down in a darkened room. Put on audiobook to entertain brain. Think about how upset some people would be that you are on benefits yet have iPad to play audiobook on, despite iPad being gift and obtained BI (before illness). Decide you must actually be dirty scrounger after all.
* Approx 3 mins later: turn off highbrow political audiobook you were listening to under guise of being intellectual, put on audiobook of The Fault In Our Stars instead as it requires less concentration.
* 4pm: Open eyes. Realise you’ve been asleep. Blink for a while as you work out what day it is/what room you’re in/own name. Realise it’s the afternoon. Head feels full of cotton wool. Get annoyed at having slept as it now means you won’t sleep later.
* Attempt to use computer. Brain fog too high. Have moment of wonderment as you remember this used to be one of your most productive times of day and wonder how you used to be able to work. Struggle remembering what your job was. Wonder if this is what government means by “work-shy”. Decide to continue marathon of The West Wing on aforementioned iPad. Realise how this piece of equipment is essential to your continuing sanity. Realise how many people would prefer you sell it for money as not allowed nice things because benefit scrounger.
* 5pm: Remember that you should probably eat and that you forgot/slept through lunch. Consider food choices. Realise energy levels mean any food that involves getting out of bed is too much effort. Consider fact Social Services do not feel you qualify for Adult Social Care, despite not being able to make own dinner.
* 6pm: After repeated poking from husband, concede that you should probably eat something. Walk into kitchen. Admire cleanliness of kitchen, give thanks for awesome people prepared to come over and do things like clean kitchen. Prepare microwave meal, feel very accomplished. Wonder if it’s going to be time for bed soon. Realise pain levels are going up again. Take painkillers. Laugh at futility of taking painkillers as you know they won’t do anything.
* 7pm: Rationalise that it’s perfectly acceptable to call 7pm “bedtime”. Sudden realisation that you’ve been in bed since 1pm anyway so point is moot. Have moment of reflection that in BI times you’d be running youth work sessions for groups of young people about now. Compare to self not being able to make own dinner PI (post-illness). Go back to watching The West Wing.
* 9pm: Switch off West Wing, turn on audiobook. Set sleep timer for 1 hour.
* 10pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.
* 11pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.
* Midnight: Audiobook switches…oh you get the idea. Think on irony of being exhausted all day yet unable to sleep
* Some unknown point: Fall asleep in a dribbly way, audiobook still playing. Wait for cat to wake you up in a few hours.
So everything seems to have taken off in quite a dramatic way over the last week or so. Ever since a few of us wrote about the possible reclassification of CFS, fibromyalgia and M.E. I’ve had the most hits on one day my blog has ever had. The World Health Organisation made sure the original article was taken down and went on a tweet spree to make sure everyone knew that this reclassification was NOT going to happen. But, the ball had started rolling and pyjama-clad warriors from all over the internet had started typing into action.
There’s now a Facebook page, there are bloggers and healthcare professionals and people who have chronic illnesses reading, and writing, and planning and talking. As I said in my previous entry, I’m a newcomer to this community. I don’t have a diagnosis yet. But I can read, and learn, and collate information. And help raise awareness of the issues that people with these chronic illnesses are having. Some of the things that have happened so far:
And why are we doing this? Although the WHO stated pretty clearly that they have no plans to reclassify fibro, M.E. and CFS, treatment of these conditions is far from ideal. There are still healthcare professionals out there who either don’t believe in these illnesses, or who believe they can be cured through therapy rather than medical intervention. I think that’s reason enough to shout about it.
There’s a lot to read, a lot to process and a lot to plan, and when it’s being done by people who have very limited amounts of energy it’s hard. But it shows that people are willing to fight. I’ve realised that my place in this campaign is probably going to be to blog, to educate myself and to post my own story. At the moment that’s the most powerful thing I’ve got.
[Edit 13th Feb: The WHO has confirmed on Twitter that they have no plans to reclassify the conditions, and that their site is a BETA site for health professionals to contribute to. However the work of Dr. Fink still persists and these misdiagnoses of CFS/M.E./fibromyalgia still occur and are still just as dangerous so I feel the point this blog post makes is still just as relevant and important.]
This afternoon, a load of posts appeared on Twitter about an article that had appeared on the Liberty Voice website.The article was titled “Fibromyalgia and ME/CFS Labeled Mental and Behavioral Disorders by WHO” and has, understandably caused a whole load of panic among the fibro/M.E/CFS community. The fight to get these diseases correctly classified as physiological rather than psychological has been long and on-going, and this seems a big step back in the wrong direction.
As I type, the article has been taken down – we don’t know why. This is a link to an image of the article before it was removed so you can read it, but the basic gist of it was that Dr Per Fink, a psychiatrist from Denmark, has classified fibromyalgia, CFS and M.E. as a “bodily distress disorder”. According to the WHO website:
“Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body.”
Bodily distress disorder is classified on the WHO classifications as a “mental and behavioral disorder”. This means that fibromyalgia, CFS and M.E. will be classified as something that has to be treated as a psychological illness, rather than a physical one. This is very problematic. Although psychological illnesses are valid illnesses that need to be treated correctly, treating a physical condition as a psychological one does not work. You cannot treat cancer solely by sending someone to group therapy, you cannot treat M.E. solely by sending someone to CBT.
Dr. Fink runs a clinic called The Research Clinic for Functional Disorders and Psychosomatics. On his website, he classifies conditions such as fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome as “bodily distress syndromes”. He feels that these conditions are all the same thing, that if a condition can’t be diagnosed in testing (such as arthritis) then it is a psychological disorder. This clinic is currently responsible for Karina Hansen, a 24 year old with M.E. who was forcibly removed from her home to go to the clinic and get treatment.
Classifying genuine physical conditions as psychological is dangerous. It will mean people will get the wrong treatment and will not be given any opportunities to improve their condition. In a lot of cases, it will make their condition worse. There is a lot of discussion in the M.E. community about graded exercise therapy and how successful or otherwise that is, and I’m planning on compiling some info about that for another post. However, regardless of whether these treatments work for some or otherwise, treating a physical illness as a psychological one means people who have these conditions will be mis-diagnosed and mis-treated.
It also de-legitimises the people who have these conditions. Psychological illnesses are very valid illnesses of course, but to tell someone that the pain and debilitating fatigue they suffer from is a psychological problem is, quite frankly, offensive.
On her blog, fibrogirl has suggested some ideas for action:
“1. Research – pull it all together fully referenced in one place, including bloggers links etc
3. share our stories – our truths
4. Galvanise the online community, our friends and loved ones to make a bloody big noise – that is coordinated and focused
5. leave a reply here if you are willing to help. I‘m just one scared angry voice – I cant do anything alone. I’m not an academic, or even a very good writer. but surely if all the bloggers, academics, medics who believe in us and we make enough of a stink we might just finally break through and get what we deserve...a true diagnosis and treatment that helps us manage these disabling illnesses“
I totally agree with what she says. I am a relative newcomer to this community, there are many people out there who have been fighting this battle for years. However I feel I have a duty to educate myself on this, and to share the information I find out in a way that might make it easier for people to understand the problems we’re facing. I agree with fibrogirl – we need to step up the fight and start making a bigger noise.