This is what happens when you don’t declare potential conflicts of interest

Senator Grassley of Iowa is demanding that the American Psychiatric Association be transparent about its financial relationship with pharmaceutical companies:

The worry is that this money may subtly alter psychiatrists’ choices of which drugs to prescribe.

An analysis of Minnesota data by The New York Times last year found that on average, psychiatrists who received at least $5,000 from makers of newer-generation antipsychotic drugs appear to have written three times as many prescriptions to children for the drugs as psychiatrists who received less money or none. The drugs are not approved for most uses in children, who appear to be especially susceptible to the side effects, including rapid weight gain.

Senator Grassley’s investigations have not only detailed how lucrative those arrangements can be but have also shown that some top psychiatrists failed to report all their earnings as required

–IP

Daily acts of bravery

As you may have gathered, it’s been a rough patch. For some time now, I have been physically unable to carry out a lot of my normal daily tasks. I’m not cooking properly for myself, for example — I just eat “easy” food like fresh fruit or things that can be prepared with minimal time and effort and washing up afterwards. I’m not studying properly either, because I physically cannot sit still, maintain concentratin, or write for long enough. Standing up for long enough to do the dishes the other day made me cry.

I feel pretty useless. I need to study. Dammit, I want to study. That’s why I’m at university; and it frustrates the hell out of me that I’ve done little or no significant work this semester.   And the floors need mopping, my room needs tidying, there’s a stack of Important Adminy Papers I have to deal with. But what I have done this week is to attend four medical appointments, arrange a further three, discuss further medical treatment options, go to hospital out of hours, get repeat prescriptions, hand in medical certificates to academic advisor, make some provisional arrangements about what I’m going to be doing next year at university, find a dentist, and install a landline phone.

So please please please try to understand that I’m on a particularly short fuse right now.  I do not need to be patronised and I do not need my efforts second-guessed.  I need the people in my life to have enough respect for me as to pay attention when I express my needs.  I’m seriously short on energy at the mo and fighting to stay as healthy as possibly is taking up most of that energy right now.  If you don’t understand what I’m talking about, start here.

Sarah wrote a post a while ago I couldn’t stop thinking about, especially this bit (but you should read the whole thing):

But I am still functioning, still handing in work, still finding a way to overcome the horrible things life throws at you, like snooty shop assistants who think they are cooler than thou, and not giving in. Because that is the bravest thing I do, and I do it every single day.

I haven’t been as productive as Sarah, but I have been brave, and it is important for me to remember that fact, and the fact that I’m doing the best I can right now, I’m holding it together as best I can despite the pain and frustration and despite the confusion of being the liaison between several medical professionals who don’t always communicate with each other as well as they could.  Right now, to borrow Sarah’s words, that is the bravest thing I do, and I do it every single day.

–IP

Congested and confuzzled

I’m bored. I’m fed up of being ill. It’s been two months now, of post-virus exhaustion and aches, and more recently a sinus issue that caused some unpleasant dizziness. I’ve not done significant academic work for two months.

I’ve always been happiest when I’m productive or active. At the moment, I’m neither productive nor active. I always feel short of a nap, spaced out, forgetful, achey.

I am deeply uncertain and frustrated about my academic options. I have exams this spring, but having missed the better part of a term’s worth of work, and with no sign of getting better yet, it’s not clear that I’ll be caught up in time for my exams in the spring. I can sit some exams in August instead of in spring, but that completely buggers up my summer in a number of ways:

I was planning to work on my article for publication in the early part of the summer, then visit family for a bit, then come back to work on my dissertation and possibly further research (if I get a small research grant), and work a proper paying job until the start of the next academic year. With exams in the summer, the possibility of further research goes out the window due to time constraints; and due to practical considerations, the proper paying job may go out the window or be limited too (I do special needs care work. It’s a highly demanding and tiring job and there is no way I can study and work at the same time. Plus, it’s difficult to get time off, and I don’t get paid for hours I don’t work). I may or may not get to do as much work on my disseration as I would like.

So…I can apply for a hardship fund to help cover the unforseen cost of sitting exams when I would have otherwise been working.

Someone suggested that I consider switching to part-time study given that health issues have impacted my coursework every year that I have been at university. But that opens up a financial minefield — part-time students are not entitled to a council tax exemption, and are only entitled to less than one sixth of the loan that full-time students can receive. So I’d have to navigate a benefits system that assumes (contrary to all sense) that people are either capable of working full time, or incapable of working at all, and I have to “exhaust all other possible source of income” — apparently, you are expected to take out loans, use all overdraft, and max out all credit cards before you get financial support — a policy that is morally repulsive as well as fundamentally stupid. It stops looking like a great option, eh?

Anyway, I’m not sure that part time study is actually what I need. I’m actually reasonably good at managing my chronic health problems — the arthritis and migraines. What messes up my academic work and planning is actually short-term illness that exacerbates my existing medical conditions. I’m reasonably good at looking after myself — I follow medical advice, I eat reasonably well, I rest as much as I can, I do all the sensible stuff. My immune system is still pretty rubbish, though.

I wish there was someone who knew what this was like, and could talk me through my academic and medical options in that light. My GP focuses on short-term medical issues, for the most part. She’s good at her job, but I do have to insist about monitoring for inflammation indicators and other long-term care issues, and she’s not an academic or an academic advisor. My academic advisor and lecturers are good at their jobs, but to my knowledge they don’t have experience of long-term health problems. I’ve had useful advice in the past about pain management and pacing and longer-term management of my health from physiotherapists. But I rather wish there was an academic I could sit down with and chat to about this stuff, and how it impacts my studies, and what I can do about it from the academia side of things.

And all this is throwing up a lot of questions for me, about my ability to continue in postgrad studies or full-time work.

–IP

Got spoons?

Here’s a wonderful explanation of living with a chronic medical condition, by Christin Miserandino, entitled The Spoon Theory. It’s a remarkably accurate analogy of what’s it’s like to have to “budget” your energy each day.

I’ve been thinking a lot about how I budget my energy, and if that’s the msot effective way I could be doing it to meet my goals each day.  Which begs the question — what are my goals?  I’m not entirely sure.  I want to be productive — I think I’m happiest when I’m either academically productive and intellectually active, or when I’m very physically active (eg, when I go on long walking trips).  And academic/intellectual activity and physical activity are by far what cost me the most spoons, sometimes causing me to run into the next day’s spoon allowance.

Anyway, read The Spoon Theory.

–IP

Human Fertilisation and Embryology Bill

The Human Fertilisation and Embryology Bill does not itself deal with abortion, but is presenting an opportunity for amendments concerning abortion rights to be tabled.

From Abortion Rights UK:

the government’s Human Fertilisation and Embryology Bill is speeding through the Lords. Although the Bill itself does not address abortion, it is expected that anti-abortion Peers and/or MPs will table a number of damaging amendments to restrict women’s rights to abortion. In addition pro-choice MPs are expected to table amendments to improve the law for women.

The Bill has already had its First and Second Readings in the House of Lords on 7th and 19th November respectively.

A stream of anti-abortion Peers took part in the debate and attacked current rights with pro-choice Peers speaking in defence of the 1967 Abortion Act. Pro-choice MPs are planning to table amendments to improve the law during the course of the Bill in the Commons.

Follow the link for more info. Amendments concerning abortion that are expected to be tabled include reducing the time limit on abortions, imposing a “cooling off” period and mandatory counselling for women seeking abortions, the removal of the need for two doctors’ signatures, permitting access to abortion in Northern Ireland, and removing the need for certifications to be sent to the Department of Health for all abortions.

If you are a UK citizen, please consider writing to your MP and urging them to protect women’s health by supporting those amendments that would improve access to abortions on demand (eg, by removing the need for two doctors’ signatures), and urging them to oppose the amendments that would restrict access to abortion (eg, the “cooling off” period and mandatory counselling).  Abortion rights has a model letter and advice on writing to your MP, here.

Hat tip:  Winter at Mind the Gap.

–IP

Why I hate feeling powerless

Chronic medical conditions are not like the flu. When you have the flu, you feel crap and blegh for a few days, and if it’s a particularly nasty flu, you might take a few days off work and lie in bed and drink chicken soup, and hopefully someone will look after you with lots of TLC.

Chronic medical conditions aren’t like that. Your life doesn’t stop. Your life can’t stop in adolescence because you’ve been diagnosed with arthritis or twice-weekly migraines or whatever. You still get up every morning and go about your normal business, even if you feel worse than if you had the flu.

Medical treatment helps, to an extent, although at no point since I first got arthritis have I had a pain-free day. Sometimes the pain is mild and only in one or two joints. Other times, the pain is greater and can affect many of the joints and muscles in my body. Since my migraines started last January, I’ve not had a headache-free week. If I took time off work or study every time my back hurt or had a headach, I’d never leave the house.

That’s not meant to make people to feel sorry for me. In fact, please don’t. What I’m trying to explain is that I have to analyze chronic illness differently from temporary illness in order to be functional.

And for the most part, I am functional for a given ability-normative definition of “functional”. I am enrolled in a full-time course, and I work full-time in the holidays as a care worker for special-needs kids, which believe you me, is a fairly tiring and physically demanding job (and underpaid, but that’s another story) and would be for anyone who didn’t have physical health problems. Of course, I say “ability-normative” definition of “functional” because I’m not convinced you have to be able to hold down a long-term full-time job or course to be functional. I am functional for a non-ability-normative definition of “functional” because I “hold it together” psychologically and emotionally and I’m reasonably happy with my life, which is already more than a lot of people can say, whether they have health problems or not.

So how do I analyze chronic medical problems so as to not feel that my life has to stop? I talked a bit about the things that chronic health problems have taught me the other day, and those are an important part of it. I have also learned to rethink what I mean by “functional” and “quality of life” and “health”. That last may sound silly, since I guess to non-disabled people “health” means not having health problems. For me, “health” means looking after myself as well as I can. I’m healthy right now because I eat well and sleep well, I do my back exercises, I prioritise my health, I am proactive in my treatment, I take responsibility for my treatment and making sure that the relevant people (eg, collaborators, lecturers, doctors, friends and family) understand what is going on with me, and I don’t spend lots of time beating myself up for being ill.

But of course, health as I think of it implies or requires (who knows which way the arrow of causation goes in this case) some degree of control over stuff. Maybe that’s a flaw with my definition of health as it stands. Or maybe it’s a problem arising from something else. I don’t really know. What I do know is that there are days when I feel I have been responsible and proactive and done everything I can reasonably do for myself and I still feel like crap and I still get upset about it.

Yesterday, for example, it was kind of important for me to feel better. I had a short assessment to do, and I had a stack of work to get on with. I don’t have class on Wednesdays, so Wednesday is my day for getting really stuck into reading and work, and that’s a lot of work time to go down the drain if I don’t feel well. But I woke up with a headache. I managed a couple of hours of work in the morning and productive discussion with a friend ona project we’re doing together, a  then horrible nauseous migraine started and that was basically it for the day.  And all the hard work I did last week to be ahead of schedule with work in preparation for a rough week of switching meds seemed to vanish and I felt terribly behind and put-upon and powerless and overwhelmed and absolutely certain that I was going to chuck up the spag bol that I had made as a treat for myself. I felt like there was nothing much I could really do, so I went to bed and burst into tears.

The Existentialist, bless him, sent lots of sweet messages, and we talked a bit about rethinking and reprocessing illness, and then he put on a mock-shrink tone and said “Do you think your anger about migraines is related to jealousy of your grandmother’s rolling pin? How do you feel about that?” And I had a much-needed giggle* and slept and did not chuck up.

Today it’s easier to put things into perspective. I know I’m still on schedule if no longer ahead with work, today’s my first day on topiramate and without the mini-pill so maybe things will start to improve, and I’ve been researching some new possibilities for treatment of my headaches. My head and back and knees still hurt and I’m not sure how much work I’m going to get done today, but things seem a little easier.

–IP

*Tangentially, and for the record, I do not have rolling pin hang-ups. At home, my parents always said that a wine bottle would do if rolling pins were not available and they’re quite right.  My last two flats have always had at least a couple of bottles of wine floating about. And then I moved in with someone who doesn’t drink, and the only appropriate bottle in the flat is a vaguely cylindrical bottle of ale that has been sitting unopened for weeks (and made the shortcrust pastry a bit lumpy the other week when I made pumpkin pie, with real pumpkin out of a pumpkin, not out of a tin), and which is going to be really really fizzy when I get around to opening it.

Parallel universes and quality of life

Part the first: Parallel Universes

The Goldfish presents a wonderful thought experiment,

However, I always liked the idea that there might be a parallel universe where there would be other versions of myself[.] And one very obviously variation would be the version of myself who didn’t get sick.

…What might have been is complete guesswork. I lost many possible futures when I became sick and gained a whole load more. I think I lost far more than I gained, and it took me a long while to register just how many had been lost, so it was natural for me to mourn. But it wouldn’t be healthy for me to cling onto any[.]

Read the whole thing. The Goldfish goes on to explore they ways she is better off than her non-ill parallel self — an idea I like, so I’m going to try the same exercise here. In what ways would my parallel self be different from my actual self?

1. My parallel self doesn’t have my physical limitations, and she’s always been reasonably healthy. She would attribute success or ability entirely to personal effort and to hard work, as I used to. I don’t think she would understand physical limitations on effort and work, nor be very tolerant of them in other people. She probably wouldn’t be very tolerant towards herself either.
2. Since my parallel self attributes needs to effort and hard work, I don’t think she’d be good at accepting other people’s needs non-judgementally in cases where those needs are not ones she understands. I’ve learned to listen a bit more carefully to what people say about what they need. I’ve learned that ultimately it doesn’t matter all that much whether I understand those needs, as long as I repsect them.
3. She doesn’t know that bodies do a lot more than provide a shell for inhabitation. She’s more vulnerable to the pop media images of what bodies are supposed to be. I’ve learned that what bodies do is far more important than what they look like — for instance, my body is good at warning be about all sorts of things, from what foods it’s short of to the fact that carrying a rucksack on one shoulder is a bloody stupid thing to do. I don’t think my parallel self would like her body very much.
4. I don’t know how well my parallel self would look after her health. She takes it for granted, so I don’t know if she’d be any good at preventing ill health. Having my activities limited by the knowledge of probable health repercussions can be really annoying but it has taught me to prioritise my health.
5. I know that the fact that something requires physical effort is not a reason not to do things. Sometimes you enjoy things a lot more if you’ve had to make an effort to get them. I think my parallel self wouldn’t have known that, since she had a fairly easy time.
6. My parallel self likes silly shoes. You know, like boots with heels. That really hurt your feet. I know better — hiking boots and comfy shoes all the way, baby.

Maybe I overestimate my parallel self’s naivety, since my impressions of her are based on my twelve-year-old self. It doesn’t really matter because I’m not suggesting that I wouldn’t have learned all those things without getting ill. I might or might not have learned them. The point is that the mechanism for my learning them turned out to be my illness, and that having learned them, my satisfaction with my situation improved vastly (ok, the last one was flippant, but you know what I mean). Learning those things, having to learn those things, turned out to be a hugely positive thing for me, and I would go so far as to say they improved my quality of life.
Part the second: Quality of Life

One of the factors in discussions about or prejudices about disabled people is that disabled people automatically have an objectively lower quality of life because there are things they can’t do. The comparison is framed in such a way that it sounds like The Goldfish’s thought experiment above, and at best, it is that thought experiment but with a selectively negative slant. Or, and I suspect this is more likely, the comparison is between the person making the comparison and the life of other disabled people as perceived through a decidedly negative lens. This comparison some fairly major assumptions that I’m going to try to unpack, and then hopefully people will comment with their views on ability and the parallel universe experiment and quality of life.

For the sake of argument, let us define “quality of life” as “the ability to be happy with your life”.

1. It is possible to be objective about quality of life.

Since your mental states can only be accessed by you, only you know whether you are happy or capable of being happy. Ergo, only you know whether you have a high or low quality of life. You can’t know what anyone else’s quality of life is like, so quality of life is inherently subjective.

2. All disabled people experience disability in the same way.

This is simply false. Disabilities range from sensory impairments, to mobility impairments, to chronic pain, to mental illness, to cognitive impairments. Someone who is hard of hearing may not be even remotely bothered by their impairment, whereas a person with a severe mental illness might deeply resent the impact that their condition has on their life. The assumption is particularly inaccurate in the cases of people whose disabilities do not inherently cause any pain or discomfort.

3. Non-disabled people automatically have high quality of life.

Not being disabled doesn’t automatically mean that you are happy with your lot. You might be living in all kinds of shit situations, or great situations, which bear absolutely no correlation to disability or lack of disability.

4. There are things that all non-disabled people can do.

This is also false. Not all non-disabled people have the same abilities. A tone-deaf person may not be able to enjoy music. A non-atheletic person may not be able to run a marathon. Yet we do not consider these people to be disabled.

5. What one can do determines one’s quality of life.

This one is trickier — I’m not happy with this one as an assumption because it’s not necessarily true. It seems to me that there is no value in having choices one does not want anyway. For example, I can’t play hockey, and let me emphasise how much I don’t care. I’ve never liked hockey. But there are things that I do enjoy that I can’t always do. Sometimes that bothers me, other times not, but not being able to do things isn’t always a function of my health. For example, I will never travel by private jet. I’d really like to because airlines piss me off, but it’s not going to happen and there doesn’t seem much point in dwelling on it. One simply accepts the realities of one’s situation, whether that situation is caused by health, financial means, or any other circumstance. People can’t always do what they want, that’s just life.

Thoughts?

–IP

Misdiagnoses and mental health

When I first got arthritis, aged thriteen, the first symptom was stiffness and pain in the joints of my feet in the morning. The first symptom that led to medical attention was the swelling of the middle joint of my right index finger. These symptoms were put down to a virus, and I was told to take ibuprofen and come back in a week if it hadn’t cleared up.

I dutifully did as I was told and saw the doctor again a week later. By this point, a few other joints in my hands were swelling and becoming painful and stiff. I was told to continue taking ibuprofen and come back in a week. I did as I was told. The next time I saw the doctor, it was clear that I did not have a virus. The doctor did some blood tests and referred me to a rheumatologist who diagnosed juvenile arthritis NOS. A year or two later, psoriasis appeared on my arm, which led to my diagnosis being changed to juvenile psoriatic arthritis.

Nobody ever asks how my virus these days, even though it is written in my medical notes from those first two appointments that I came to see the doctor on account of a virus which caused joint pain and inflammation. Everyone just talks about my arthritis. Everyone is quite happy with the fact that the “virus” was a misdiagnosis, and what the doctor originally wrote in my notes was incorrect. It cannot be changed because medical notes are legal documents, but everyone acknowledges that those particular notes were incorrect, and everyone is quite happy with the fact that I do not have arthritis NOS, I have psoriatic arthritis. The diagnosis of “arthritis NOS” was incorrect.

Mental health is an entirely different kettle of fish. If you get a mental health diagnosis, you will be stuck with it. Even if it was incorrect. Even if the condition is no longer present. Today I went to see my doctor because my migraine prophylactics, which were working beautifully over the summer, are not working that beautifully right now (resulting in headaches all day every day for the last week and a bit, and weekly full-blown migraines), and my GP and I have talked about my switching to a different medication.

In fairness to my GP, she’s learned a lot about me and the kind of patronising down-talking I don’t stand for. I was expecting her to say, as she has done on every previous visit to her, “You’re just stressed”. When I protest this, the usual response is something to the effect of my having had a mental health diagnosis at age seventeen, and this means I have a low stress-tolerance threshold. Or something.

She’s a good doc. It’s taken a while to communicate the fact that I don’t appreciate her second-guessing my mental states, or conversations that go:

Doc: You feel X because you have a history of Y.
Me: Actually I never felt Y, what I felt was Z.
Doc: But here it says you felt Y. It’s ok if you don’t want to talk about it, but you definitely felt Y.
Me: No, I felt Z. I know I felt Z and not Y because it was me doing the feeling, and not you, and my mental states are not accessible by you or indeed any other doctor.
Doc: Well, It says here you felt Y. I can see this conversation is stressful for you.
Me: I’m not stressed, I’m pissed off!

And so on. I was pleased to see a change today. I was pleased that I’m finally being talked to as though I know something about my body and what I’m feeling at any given time. But it still puzzles me that, when it comes to physical health diagnoses, everyone is ok with the idea that doctors can be mistaken and that diagnoses can be changed. When it comes to mental health, it’s so difficult to get a doctor to accept that another doctor might have been wrong, that a diagnosis might have been incorrect, or that a diagnosis may no longer be correct — mental health diagnosis don’t seem to allow for the fact that people might get better.

Still, credit where credit is due. The GP was helpful today, and wrote me a prescription for sumatriptan, I now have an appointment to have the coil inserted, and if all goes well I should be able to change my migraine med a week or so after that.

–IP

Hysterectomies and Ashley-style treatments

The mother of a fifteen-year-old with cerebral palsy has asked for her daughter to be given a hysterectomy. The doctors are seeking legal approval:

Katie’s mother said the operation would stop her daughter from going through unnecessary suffering.

Mrs Thorpe said: “All we are trying to do is keep and improve Katie’s quality of life.

“By stopping menstruation it’s allowing Katie to enjoy life to the full without the problems of menstruation…the mood swings, the tears, the stomach cramps, the pain, the discomfort, the embarrassment.”

Mrs Thorpe said her daughter would not be able to ask for help or even let people know what she was feeling.

She said the decision had not been made lightly, but was something she had thought through for many years and finally decided upon when Katie turned 13.

According to the Sunday Times, Phil Robarts, a consultant gynaecologist at Mrs Thorpe’s local hospital, supports her decision.

Mrs Thorpe said: “She’s not going to get married and she’s not going to have children…Katie is not going to become a normal adult.

“I absolutely understand that it’s not for everyone, and I’m not saying it should be either.

“I’m not advocating this should be a blanket policy for all disabled children, absolute horror at that.”

No, it shouldn’t be a blanket policy for all disabled children.

I’m not convinced that preventative procedures as invasive as this one, with as many side effects as this one, are justified. The argument that this child will not be using her uterus doesn’t convince me — we don’t advocate hysterectomies for women who don’t want kids, so it seems intuitively that when it comes to able-bodied people we don’t advocate major surgery just because an organ won’t be needed for its conventional purpose. I much prefer Daniel Sokol’s take on the dilemma:

My immediate response, when first reading the case, was to advocate a “watch and wait” approach to see how Katie copes with this additional challenge.

Perhaps, with time, she will not be as distressed as anticipated.

Perhaps less invasive alternatives will work.

Alternatively, menstruation could prove unbearable and a hysterectomy may be the best option.

Hysterectomies are not without risk, nor are they without hormonal side effects. For all we know, it might be the case that the hysterectomy has a far worse effect on this girl’s comfort and wellbeing than menstruation would. It may be that her menstruation turns out to be completely unmanageable and painful, in which case treatment (either over the counter, or in the form of oral contraceptives, or in the form of a hysterectomy) might not be inappropriate. But it might be the case that her menstruation is a piece of cake — not all women get pain and mood swings with their periods.

I don’t like the idea of a non-trivial procedure being done just in case her periods turn out to be unpleasant. Why not wait and see?

I also don’t like the precedent this case and the Ashley case set. If the problem is that care of disabled people is difficult, there should be more support for family and friends who are carers, and there should be a lot more (better) provisions for professional home care. Those are social problems, and ideally should be addressed with social change, not with major surgery on disabled people. In the Ashley case, the parents did not have acceptable options for the care of their daughter, and in their view the best option was to care for their daughter at home, which in their view was not possible unless their daughter was small enough for them to lift. One can agree or disagree with the decision they made, but that is not the issue. The issue is that they were put in a position where they didn’t have any “good” options in terms of their daughter’s care. That is a social problem, and ideally should have been addressed with social change. Disabled shouldn’t be put in the position of not having any good options for their care.

In the case of Katie Thorpe, I disagree with the decision the parents have made, but that’s almost a side issue. The real issue is: why are the parents in the position of making this choice? Why aren’t there provisions for the care of disabled people that do not lead to parents feeling that their children’s puberty would be unmanageable? Why do we, as a society, feel it would be more acceptable to surgically prune disabled peole into society, rather than providing adequate support for disabled people?

–IP