Saturday, April 14, 2007

New Doctor

Firstly, after the bout of knitting woes, things started going better again. I now have a blue swatch of ribbing and am part-way through a blue swatch of seed stitch (aka moss stitch). I think this is my favourite so far to look at and feel, but it does seem to take a bit longer to get to the end of the row.

Secondly, I've had a letter from the Disability Living Allowance people, explaining that they have received my claim renewal, and want to write to my GP for more information. That's pretty normal and nothing to worry about. After all, it'd be a bit pointless if they didn't check with at least one medically qualified person.

When I first applied, just under two years ago, I was quite pleased to hear that they would contact my GP. Dr W has known me and my family since I was a kiddie. She saw my childhood illnesses, my mum's long-term health problems, my marriage and subsequent divorce, my teenage smear-test scare. She's the person who diagnosed me with The Lurgy. She knows me well enough to know I'm not the sort of person who would be trying it on. She knows the sort of lifestyle I had before I got ill, and how it compares to the activity levels I have now. I could not think of a non-family person better placed to give the DWP useful, in-depth and accurate information about my health.

She is also, currently, on maternity leave.

I have seen Dr M, the locum who is covering for her, twice. Both times were follow-ups regarding an ear infection I had a while back. She was very nice, efficient, and gave the impression that she knew what she was talking about. Unfortunately my ear infection had sweet buggerall to do with my Long Term Lurgy, unless you count that I've had as many, if not more, visible "oozy" acute infections (yum) in the last couple of years since I got ill, than I had in the fifteen years before.

So, when I saw her about the ear thing, I mentioned that I was working on a DLA renewal and that they might want Dr W's input, which may fall to her. She smiled and said this had already happened with one of Dr W's patients - what she would like to do is make a long appointment with me once they contact her, and we can go through her part of the form then.

No problem, right?


My diagnosis label is "ME/CFS". In non-medical terms that means "we don't know". There are three main schools of thought. One is that people with ME/CFS have a psychiatric problem - that the reason we experience the physical symptoms is because of some past uncovered trauma, or low self-esteem, or stress issues. Sort of like a panic attack, only instead of the physical manifestation of our mental issues being shivering and trouble breathing and pounding pulse, we get the pain and whatnot, and instead of it being for a few minutes at a time, it's more or less constant. Another viewpoint is that people with ME/CFS have a biological problem that medical science doesn't have a conclusive test or cure for yet. Medical research from the biological viewpoint is ongoing but underfunded - after all, ME isn't a spectacular illness with a high death rate. The other widely held opinion is that people with ME/CFS are making it all up, for fun/attention/time off work. Thankfully this is more rife among the general public than the medical profession.

I do not know which of these theories Dr M subscribes to.

Dr W can confidently feel certain I'm not malingering, because she has known me for many years. How to convince Dr M, who I've known for all of fifteen minutes, that I'm not a workshy scumbag?

Similarly, I know that if Dr W thought my problems were psychiatric, she would have immediately referred me for whatever flavour of psychiatric help she deemed most appropriate. As such, on my original DLA forms, the minor mental health trouble I had were listed as a secondary effect of my illness - in other words, that I got bouts of depression and mood swings because I lost my job/was unable to go out like I used to/got frustrated by my physical limitations/was in a large amount of pain. But what if, this time, Dr M puts it all in as "mental health"? Will they consider my illness to have changed, and would I get into trouble for that?

Or even if Dr M accepts that I'm not making it up and am psychiatrically sound, how do I properly describe the effects my illness has on me without sounding like a whinger? When I'm meeting people, particularly if I don't know them well, I try to be positive and upbeat, try to make a good impression. I'm full of painkillers and if the illness comes up I say things like "the hourly pay sucks but the parking's great" or "meh, it's only a bit of pain, it's not actually going to kill me". What the DLA people need to know about are the bits I don't like people to see - about the pain that is so bad it reduces me to tears, the dizziness that makes me vomit, the lack of dexterity that makes me drop my plate of dinner all over myself and the floor. See, you can hear those violins already. So how do I give a clear picture without giving a bad impression?


The Goldfish said...

To be honest, I think you have very little to worry about - although I do understand, having just met my new GP and gone through the "Will they get it?" nerves.

The main point is that Drs M and W are colleagues. Even if Dr M has some bizarre non-medical ideas (scumbag not being a clinical diagnosis) to let that interfere would be to contradict a colleague's professional opinion - an opinion come to over time and clinical investigation. She also has nothing to gain by it if she does have a pet theory about your long term situation; she is only seeing you about the DLA.

Which is the second point. Nowhere on the form is she asked to speculate about the aetiology of your condition. If you condition was psychosomatic, then that wouldn't mean you could consciously wish it away - you would still experience the pain and fatigue and still have these functional limitations. The only thing the cause of your illness should effect is the long term strategy - and given that you have another doctor looking after that, in the shape of Dr W, Dr M has nothing to gain for kicking up a fuss about it in an appointment about DLA.

Therefore, I strongly think that, apart from the fact that doctors with absolutist views on ME/CFS are now relatively few and far between, this lady is going to put down the functional issues (which is what DLA is about, regardless of impairment or aetiology), that she can glean from you and your medical notes. In fact, I fear she may be somewhat disinterested in why you experience these symptoms.

Mary said...

Thanks for taking the time for such a thought-out answer. You are right: the DLA application should be solely about my functionality, what I have problems with, what I need help with, and not really about why this is the case.

Part of it is that I have no idea what her part of the form will look like. I'm intellectually fairly sure there's no bit on it that says "What is your personal opinion of the claimant? Is it all in her head?" but there's the little irrational bit of me that won't be convinced.

Part of it is the attitudes I encounter online, not just the pretty much constant flow of "yuppie flu, malingerer, you're making it all up" and so on, but also the whole "okay, so you have some physical problems, but you have two arms, two legs, you can wiggle your fingers and toes, you're not dying, so how dare you consider yourself to have a problem/be worthy of welfare benefits?"

The biggest part, is just getting across to her the problems I have with my day-to-day life, without seeming like an utter wimp, or a pessimist, or anything.

The Goldfish said...

Things might have changed since then, but when I first applied for DLA and had a lengthy appeal process eventually coming to tribunal, I got to see the form the doctor had filled in and it was all functional stuff (Does the patient have any trouble walking? Does the patient have any trouble lifting things? etc) - except prognosis. And if I remember rightly, that was just a matter of "Is the patient likely to have these problems for at least the next six months?" or something to that effect.

I think it's partly how rotten - and indeed, self-doubting - the doubters make you feel that makes you feel that almost everyone must feel that. It is also the case that there are lots of people who just want to have a go and use the relative anonymity on-line to express views they would never say in person and probably don't seriously believe.

As for the medical profession, a great number of old school doctors who thought, "If I can't explain it, it cannot exist." are vanishing fast.

As for your impairment status, it is a completely bizarre attitude folks have but the same applies to most impairments. Very few wheelchair-users cannot manage at least a few steps. Most disabled people have conditions which don't mean some absolute mechanical or sensory loss (like paralysis or visual impairment), but have conditions whose effects vary and are, at least partialy, subjective.

But you have a mobility problem and a serious cognitive problem that stops you working (a somewhat significant issue). Anyone who says you are not disabled has a very strange idea of what disability is.

Anonymous said...

Seems to me that the post is a rehearsal for what you are going to say. You don't come over as a self-pitying wimp. You tell it like it is, with a touch of humour, but not so much that you sound like you don't need help.
Dr M just could be on your side as well as Dr W.

Mary said...

Varske - yes, it is kind of a rehearsal. I've been trying to get things straight and succinct in my head, prepare for all possibilities... a large chunk of the problem is probably that I simply have too much time to think!

Goldfish, thanks for being so reassuring :) *hug*

Anonymous said...

I have no real help to add other than you are in my thoughts what with having a potentially awkward time ahead.

S xx

Mary said...

Thanks, S. Hope you and your dad are getting on okay.

Anonymous said...

Just a thought - perhaps taking along your form would help? I hope it all goes OK - I'm sure it will ((hugs))

Vics said...

I can only sympathise because when I'm forced to think about the damned thing I cry - and then I get embarrassed which in turn makes me cry even more..
Makes for a short conversation though ;0)

I not long since had a medical assessment for DLA - turned down flat unsurprisingly, i just about manage to live on incapacity benefit alone but it's a big comedown form the wage I had working my 2 jobs before the DD struck.

Somehow the benefits people all seem to miss the pertinent point of 'was FORCED to leave work through illness' not 'got ill, never went to work' I dunno about you guys but i'm pretty sick of being poor and having no way to change the situation.

Mary said...

Are vic and vics the same person?

For me it's not whether I get the money or not. I know that I *can* survive on Incapacity Benefit alone. It's a pretty crappy existence, but I'm good at budgeting. And I have parents and friends nearby who'd never begrudge me a sandwich.

It's more the uncertainty, and the upheaval. Since it's a renewal, and I've already been awarded DLA once, they might look at it and go "right, carry on, same rate, another two years" and that's the best feasible scenario.

However, they might decide to change something. And no matter whether they bump just one component down by just once notch, or cancel my award completely, I have to adjust, inform, or even completely reapply for everything else I get - IS, IB, Housing, Council Tax - and go through the same months-long nightmare of incompetence I had to deal with the first time round.

I'm not sure how pertinent it is that we worked and had to leave - if a kid aged 14 gets the same illness I have at the same level I have or worse, and it is still present when they are 20, I'm not going to slam them for never having worked.

Anonymous said...

Oh Mary, you mustn't feel bad about telling a doctor just how awful you feel, it's what they're for!! And the only way they can give you or help you get the help you need is if they know what's really going on. Like Varske said, you certainly don't come over as self-pitying. Good luck with it and I hope it goes well.

I've had food poisoning the last few days, and as I lay limply on the floor, I thought of you and of spoon theory! Anyone who tells you it's all in your head is talking a load of rubbish (which you already knew, I just want you to know that I know it too!!).

Devil's Kitchen said...

What's your opinion of the possible connection between ME and Lyme disease?


Mary said...

Hi DK. Well, I've personally known someone from an ME support group who scraped up enough money for a private examination and tests, and lo, he was told that he'd been unnecessarily suffering for the last ten years - the prime of his life - because he'd really had undiagnosed Lyme. He's currently undergoing aggressive antibiotic treatment. Privately funded of course.

So I believe that some people with the ME/CFS label actually have undiagnosed Lyme. I don't know if I'm one of them or not.

BUT, I don't believe you could take the entire ME population and split them into "undiagnosed Lyme", "psychiatric problems" and "making it up".

I discussed this in further detail here, you might find the comments on that interesting too.

Anonymous said...

Theres still alot of problems with people suffering ME/CFS when it comes to benefits even if your doc will back you up so I hope you get yours I was refused it.

I think one of the main problems is education on the illness this country have different perseptions like what was posted saying you have ME/CFS well sorry that is worry theres ME or CFS they are both complete different but have many symptoms the same I had even been told this by specialists at Radcliff and Nuthfield Hospitals.

this explains

Mary said...

Hi Anonymous

Don't know if anyone will read this, but I'll put it in...

I don't get excited about illnesses. "ME/CFS" is the label which has been applied to me by the medical professionals I have seen. "CFS/ME" is the term which the DLA decision-makers use to describe anyone with "a chronic fatigue illness". I really, really, don't care enough about it to insist on differentials or to do research to find out what those differences are. Diagnosing me is the doctor's job, my job is to get on with my life.

On this occasion, my claim was unsuccessful. I speculate that this was partly because of the Locum GP, and partly because of DWP guidelines about what should and should not be awarded to claimants with what they call "CFS/ME".