I get it: but I'm still against assisted dying

As I sit here writing, my back on fire, my feet feeling like they have shards of glass inserted deep into the tendons, I want to say this: I get it. I have understood since I asked my mum to remove the razors from my hospital bathroom. There is a desperation, a hopelessness of facing a life where your current, terrible situation is unlikely to improve that moves beyond depression into profound despair.

I am not pretending that I understand (yet) what it is like to be in a wheelchair, though I sometimes need to use sticks to walk. I am not pretending I know what it is like to be unable to wipe my own bottom, though there are days when I can barely get off the toilet and feel chained to it. I often have to make an unenviable choice between passing the day in bone-deep, strength-sapping pain or taking pain killers that dull the body and mind (not great when, as a PhD student, my primary occupation is thinking). So no one can and should accuse me of not understanding, of lacking compassion.

Because my fear is that this is where the assisted dying debate is heading. In his recent article reversing his opposition to assisted dying, former Archbishop of Canterbury Lord Carey cites the need to prioritise "compassion" over "doctrine" as being one of the key reasons for his change of stance (http://www.dailymail.co.uk/news/article-2689295/Carey-Ive-changed-mind-right-die-On-eve-Lords-debate-ex-Archbishop-dramatically-backs-assisted-death-law.html). There seems to be a growing, insidious assertion by some promoting the assisted dying bill that those in opposition are only against the bill because they cling to outdated principles ("dogma", as Lord Carey calls it) and place those principles above their compassion for fellow humans. "If only you experienced or witnessed the suffering," the argument goes, "you would surely change your mind."

This argument, whether made overtly or covertly (and indeed deliberately or unconsciously) is deeply patronising. "I am further down the road than you - if you had seen what I have seen, experienced what I have experienced, you would come to the same conclusions as I have."
 

To which I say: no. I live in chronic pain, with little hope of long-term relief. I sometimes can't get off the toilet. I have trouble walking. I sleep for ten hours a night and still feel like I am wading through treacle. I know what it is like to suffer. Yet I am against assisted dying, in spite of the fact that there are days when I think: why go on? If this is it for the rest of your life, why continue?

My personal answers to those questions are based heavily on my faith in a God who loves us and is in control over what happens in our lives (a faith which, incidentally, is stronger now than it has ever been, not in spite of but because of the suffering I am experiencing). But even without such faith, there are strong arguments against ending your life. And crucially, there are stronger arguments against changing the law, which, we should not forget, is the primary issue which is currently being debated in parliament.

The main reason, as the current Archbishop of Canterbury Justin Welby has pointed out, is the precedent that a change in the law would set, such that many elderly and vulnerable people would feel duty-bound to end their lives (http://www.telegraph.co.uk/news/religion/10963362/Archbishop-Welby-Assisted-dying-is-sword-of-Damocles-over-vulnerable.html). To those who dismiss this fear, I say this: I am a young and independent person, yet I have sometimes fretted about the burden of worry and distress I place on my loves ones, and thought in my darker moments that it may be better for all concerned if I were to die and allow people to mourn and get on with their lives. If this has crossed my mind, how much more so those who have severe disabilities which place a great burden of care on their loved ones?

Up until now, premature death has not been an option. But if this bill were to pass, it would open up the possibility, which would be enough to cause great disquiet and distress in the minds of countless people who feel themselves to be a burden. Lord Carey argues that his change of stance is motivated by the desire to minimise anguish and pain, in accordance with the Christian message of hope. What about the untold anguish for countless numbers who would, if this bill were to pass, need to face the impossible decision of whether to end their own lives or continue living and being a burden on their loved ones? Surely this bill would compound the distress of themselves and their family in an already difficult situation? (For an excellent reflection on what this might look like, see Giles Fraser’s blog: http://www.theguardian.com/commentisfree/belief/2014/jul/04/assisted-dying-triumph-market-capitalism)

The pro-assisted-dying argument that counters the above assertion goes as follows: “this law would only apply to a limited number of people, and strict safeguards would be put in place”. But we can see from other countries such as the Netherlands that such laws rarely stay limited in this way (see the comments of Dutch Professor Theo Boer, a former advocate of assisted dying: http://www.dailymail.co.uk/news/article-2686711/Dont-make-mistake-As-assisted-suicide-bill-goes-Lords-Dutch-regulator-backed-euthanasia-warns-Britain-leads-mass-killing.html)

“But why should people in intolerable pain suffer for the sake of what might or might not happen further down the road?” Let me flip this argument on its head: why should the many disabled and vulnerable people who currently live in this country be put at risk of harm and distress for the sake of a few, understandable though their wish to die may be?

The quality of life argument is also an interesting one. Lord Carey argues that it is quality of life, not number of days, which is important. I agree. But poor quality of life is not something set in stone; an impairment can be mitigated by societal and personal factors. A person with chronic pain undoubtedly has reduced quality of life due to their condition; however, the support of family and friends, the use of medications and the development of new technological interventions can go some way to counterbalancing this (see here for an awesome new invention designed to help people who are paralysed: http://www.bbc.co.uk/news/health-27828553). Poor quality of life is not a hopeless death sentence. Can we not focus on improving people’s lives, rather than ending them?

I argue against assisted dying in spite of my current state of chronic pain, for the sake of others who cannot speak for themselves, and because ultimately all life is precious. You may disagree with me. But please don’t say that I will only change my mind if I could have experience of suffering. I have this in abundance.

A day in the life of a Crohnie

Happy New Year! (can I still say that on 15th February?) I guess when I haven't posted on my blog for a while, certain chronological liberties are permitted...

As many of you will know, I continue to battle with what has now been diagnosed as Crohn's disease. As well as new symptoms to cope with, I have noticed that there is a prevalent lack of awareness amongst the general population as to what Crohn's disease is, how it manifests, and how it can be treated.

So to combat this amongst my close friends and family (or at least amongst those of you who read this blog) I thought I'd set down, in all their glory, the main issues that I am currently experiencing, in an attempt to raise awareness of the impact of this disease. This post inevitably comes with a number of caveats:

1) The following information carries a TMI health warning (that stands for "too much information" for those of you not familiar with text-speak). I am going to detail what I experience on a daily basis, so the squeamish amongst you may not want to read further. Fair warning, but having said that, I make no apology for being honest about this debilitating disease, even if some of the symptoms do happen to be taboo. Maybe just don't read this over dinner...

2) My condition fluctuates, so what is detailed below is condensed information about the issues I experience. Perhaps "a month in the life of a Crohnie" would be a better title for this post, as I do not face all of these challenges every day (in case some of you were wondering how on earth I function with multiple awful symptoms).

3) I do not pretend to be representative of all people with Crohn's. Crohn's disease, perhaps more than most, is a highly variable condition in terms of its severity. I would say though that I am probably in the "moderate" category of disease severity, so that the burden of disease is about what an average person with Crohn's may face.

4) This is not meant to be a dig at friends or acquaintances for their ignorance! We've all been in that awkward situation where we've made a probably inappropriate comment and instantly regretted putting our foot in it with someone who is going through something alien from our own experiences. I just hope that by outlining the following challenges I can help you to understand better the experiences of people with inflammatory bowel disease in a non-accusatory or condemnatory tone.

So, having said all that, outlined below are the major challenges I am currently facing. If you have Crohn's or Ulcerative Colitis yourself, you may empathise with many of these, but feel free to post more in the comments section! And if you want to know more, please do ask. No question too awkward or gross (well, maybe).

1) Diarrhea. This is one the big symptoms of Crohn's. While I do not experience diarrhea every day, during a flare I can be going to the loo up to 15 times a day. Think back to the last time you had food poisoning (you really shouldn't have eaten that kebab from the roadside van, I mean, it's just common sense). Now imagine that instead of just a couple of days of diarrhea and pain, that was ongoing for weeks, and you'll have some idea of how exhausting the whole disease process is.

2) Fatigue. I guess this one is an obvious consequence from the first point. (I could make a joke here about number one and number two...oh wait, I just did). Fatigue is a direct consequence of the dehydration and weight loss caused by diarrhea, but is also compounded by the inflammatory processes that take place throughout the body (similar to what you experience when you have the flu).

3) Weight fluctuation. Before diagnosis, I lost 10% of my body weight, and am now close to regaining it and more due to the steroid medication I am taking to suppress disease activity. Unfortunately, the steroids cause your body to retain fat in rather odd places (most notably your cheeks, which results in the attractively termed "moon face" common in long-term users of oral steroids). Weight fluctuation is frustrating from a body image point of view, and practically means buying more clothes! Not that an excuse to buy more clothes is a particular tragedy for me...

4) Medication side-effects. Steroids cause a whole host of side-effects, but fortunately (perhaps) you can't be on them for too long. The longer-term medications such as azathioprine, however, are not much better. Drugs which suppress your immune system are likely to do so a little too well if you don't get the dose right, leaving you vulnerable to infections and bone marrow problems. Azathioprine is also classified as a carcenogenic substance, due to its association with an agressive form of lymphoma. It's difficult to put the tablet in your mouth and swallow it when you know all this!

5) Malnutrition. My small bowel (see helpful multicoloured diagram if your anatomy is a bit fuzzy) seems to be one of the main offenders in this disease. This means that key nutrients such as calcium, iron and B12 (to name but a few) are not absorbed properly, no matter how much milk, spinach or marmite I ingest. Role on the B12 injections!

6) Arthritis. Many of you will know that I experienced the arthritis associated with IBD before the Crohn's symptoms became apparent. Unfortunately, most of the drugs used to control the arthritis pain (non-steroidal anti-inflammatories such as naproxen) cannot be taken by people with Crohn's due to the effect they have on the gut. Similarly, taking codeine is a bad idea as it causes constipation and accompanying gut pain and exacerbation of inflammation. So I am left with paracetamol and physio (30 minutes of exercises every morning for the rest of my life is a small price to pay for reduced pain and increased mobility!)

7) Uncertainty. While this is not really a symptom of Crohn's, it is a common feature of the disease. Everyone is individual, and every Crohnie's disease process is different. So it will take a while for me to work out what drugs work, how long they work for, and how severe my disease course will be. This causes a lot of anxiety and stress as I attempt to plan for the future without really knowing how debilitating the disease will be.

I think that's enough to be going on with. If you want to know more about the disease, please do visit the National Association for Crohn's and Colitis website: www.nacc.org.uk. I've just become a member so may be sporting some fetching red merchandise in weeks to come!

Thanks for reading :-) Hopefully this will have given you an insight into the "typical" challenges of someone with Crohn's and will help to raise awareness of this debilitating but often taboo disease.

New Directions

The eagle-eyed amongst you will notice that my blog has changed. In place of a spine in the background, there is now a rather attractive image of the human digestive tract (believe me, there were plenty worse I could have chosen from!) Also, my strapline is different. This is because a new element has been added to my already complex health picture: Inflammatory Bowel Disease.

Most people, myself included, would never think to connect digestive system pathology with arthritis. The two conditions seem completely unrelated. In fact, how they are related is still something of a mystery, but what is known for sure is that approximately 20% of people with Inflammatory Bowel Disease also display some form of arthritis, which is often in the form of spondylitis (arthritis of the spine). There is a good summary of the condition to be found here:
http://www.healthline.com/health-slideshow/enteropathic-arthritis#1

My personal story is that recently I have been experiencing severe diarrhoea, abdominal pain and weight loss, which eventually culminated in an admission to the Royal London Hospital for a week in mid-December. Although the diagnosis is as yet unconfirmed, it is most likely to be Crohn's Disease, one of the two main types of IBD which can affect any part of the digestive tract. Mine appears to be in my small and large bowel, which as you might expect has caused a lot of difficulty in absorbing nutrients from food. The gastroenterologists have treated the inflammation aggressively with steroids, which appears to have helped; I am now waiting to hear as to the confirmation of the diagnosis and the extent of the inflammation via biopsies and scans undertaken during my time in hospital.

You might think that all of this is yet another blow to my health situation. It is indeed a lot to take in, and there are still many uncertainties with regards the disease extent and severity. But in fact, I had been warned by my rheumatologist in Bath that something like this might happen. He looked at my family history of Crohn's and the arthritis with which I presented to him and joined the dots correctly. I am almost looking forward to walking into my outpatient's appointment with him in January and telling him the news - it appeals to my Dr. House-like sense of diagnostic completion!

For now, this is a brief update post in between resting and Christmas festivities. In the future, I am hoping to write more on my blog about my experiences in hospital, living with IBD and the balancing act required to treat both Crohn's and the associated arthritis. For now, I would encourage you to read and learn more about IBD via the following website: www.nacc.org.uk. Perhaps due to British squeamishness about all-things toilet-related, IBD seems to me to be an under-recognised condition which is viewed as something of an embarrassment. I want to raise the profile of my newly-diagnosed condition and thereby hopefully help people understand what it is like to live with IBD, thus hopefully improving attitudes to those who suffer from Crohn's or Ulcerative Colitis.

But in the meantime, have a Wonderful Christmas! And don't eat too much :-)

Transport Dilemmas

Every year, like the inevitable turning of the leaves, darkening of the evenings and cooling of the temperature, comes the return of vast numbers of students to London after their summer break. This year, I was part of the mass Exodus, although my experience of the Autumn return has been somewhat different.

For a start, I did not simply go home to enjoy mum's cooking and Sky TV (though these were undoubted benefits). I went home partly to work in schools local to my parents' home, but also to recover having been newly diagnosed with spinal arthritis. My time at home was an ideal opportunity to develop good habits in terms of physiotherapy and pacing in preparation for return to the frenetic London life.

And it is frenetic. I don't think I'd realised before how physically and mentally draining it is to live here, and dealing with a chronic condition only accentuates this. It has been since coming back to London and comparing life here with life at home that I have come to realise this stark contrast. So here are some of my reflections. They form part of a wider series of posts that I hope to be writing in the coming months, outlining everyday dilemmas that people with chronic conditions face. Some of them may seem trivial, but they have been my constant companions recently and so I thought it would be useful to reflect on some of them.

This post will focus on transport. Now Londoners are never shy of complaining about the tube / buses / cars / cyclists / whatever other mode of transport happens to be subject to their disapproving scrutiny. But there are difficulties with transport that a traveller can face beyond the hazards of signal failures and leaves on the line (which would be impressive on the underground).

1) My transport dilemmas begin before I leave the house. The first question is: do I walk to the station nearby or do I get a bus from outside the door to a different station? Both have their positives and negatives. Walking is good for my back, but bad for my knees, especially on hard London pavements. Walking is also quicker (strangely) as I use a route which gets me to work faster than the bus option. I have to weigh up whether my knees will last the 10-minute walk given their recent grumbling / the weight of my rucksack / the speed at which I need to walk in order to be on time.

2) Do I take my sticks? You might think it was an easy decision based purely on whether I need them to walk. Not so. Because depending on the time at which I wish to travel, I may not get a seat without them. So if I do not take them and then don't get a seat, I will paradoxically be more likely to need them to support me when I'm standing on the rocking train. Unlike those with a "baby on board", I do not have the convenience of being able to pin an "unseen disability" badge to my coat.

3) If I don't take my sticks and do manage to get a seat, do I give the seat up to the elderly woman who is forced to stand by the stubbornly oblivious passengers who bury themselves in their newspapers? Is her need greater than mine? How do I tell? What does she think of a young person taking a seat when she has to stand? I have not had many experiences of being reprimanded for taking the priority seat, but they have happened (and one of them was when I had crutches on prominent display).

4) Would it be better to call the whole thing off and take a taxi? I have thankfully been provided with a taxi fund by the Disabled Students' Allowance this year, but this comes with certain conditions. I have to pay a student contribution on the grounds that all students pay for travel costs (even though normally I travel on a travelcard, so this works out as an extra cost for me). The taxi service, however, is not particularly reliable, and the nature of my work is such that I do not always know when I will need to travel (and the taxis have to be booked in advance). So then I can end up standing around waiting when all I want to do is go home and rest, and when it would be quicker (and cheaper) to take public transport.

The solution? I'm still working on that one. Sometimes I address these dilemmas and make choices that may be good or bad ones with hindsight. At other times, I work from home. The joys of being a PhD student.

 

Daily life

It's been a while since I've posted here, mostly because PhD-related matters have taken over, so that I have become obsessed with p-values as a way of validating the last 12 weeks of my life and work (thankfully I can say I have reached the magic value of p<0.05, so all is well).

I thought that I'd use my return to the world of blogging as a way of revisiting my original purpose for writing this blog; to be a helpful and insightful source of information about everyday life living with a chronic condition.

I want to write about this because I strongly believe that, as a society, we are not well-equipped for dealing with people with chronic conditions (that is, conditions that are not life-threatening, but from which a patient never truly recovers).

You can see hints of this in your local stationery shop. What choice of message do you really have when trying to find a card for someone who's unwell? It essentially boils down to  "Get well soon" cards. The imperative nature of this sentence implies a command rather than a hope, and therefore that getting well is somehow in the patient's control (who would love to be better in a flash, but unfortunately life doesn't work like that). These cards reflect the fact that in our society, it seems, there are broadly two categories of people:

1) Those who are acutely ill, who spend their time of sickness in a hospital (rather than in days gone by, when the ill and infirm would often have been cared for at home). The unwell are encouraged to "get well soon" as quickly as possible so they can rejoin group number 2.
2) The completely well, who are able to run around and take part in every single activity that today's frenetic lifestyle throws at them.

It is as if we've forgotten that there are people out there in our homes, schools, places of work, on the bus, attending outpatient appointments, who in fact live every day with some reminder of their chronic condition. And I believe we often forget because those of us with chronic conditions feel a lot of pressure (from within ourselves as well as out there in society) to hide the condition that we live with.

Let me illustrate this with another example. I am often greeted by friends who haven't seen me for a while with "You're looking much better" or "Are you feeling any better?" (please don't worry if you can remember saying this to me at some point - I am as guilty of it as the next person, and I have even less excuse!) Do you see what this does to the listener? Like the ever-more-ubiquitous "how are you?", we are forced to reply yes or agree with the assessment that things are looking up.

Of course, everyone would love it (me most of all) if I could permanently ditch my sticks. But sadly, chronic conditions do not work like that. And by implying, however subtly, that the person in front of you "really should be better by now", you can inadvertently make someone feel guilty for their illness (I would think this is particularly true of people with long-term depression or other mental health conditions, though I have less direct experience of this).

So I would encourage you to remember that there is indeed a group number 3) to add to my analysis above. They are people who live daily life with permanent reminders of a chronic conditions, whether through taking pills, struggling with fatigue, experiencing mental highs and lows, or grappling with unrelenting pain. They are all around you, and many of them will hide their illness or disability in an effort to keep up with today's hectic lifestyle.

How about asking them "So how's life really going for you?" as a way to unlock how things are really going for them? You might be surprised, both by how difficult daily life is for them, and how grateful they are that you've taken an interest.

 

Pet Therapy

I was going to wait for my Disability Living Allowance claim to come through before I posted again, but it seems that this will involve a long silence on my part (the rusty wheels of government grind very slowly). So in the meantime here are some musings on the latest arrival to our family home.

Last week we acquired Silfa, a 13-week old Maine Coon pedigree kitten. She has a more detailed family history than I do (I'm not sure I could name any of my great-grandparents, but hers are available to view on the certificate we were given to guarantee her breeding).

She has already settled in well and has spent more time already in various laps than our previous cat did in his entire lifetime. She has an adorable habit of purring like a steam engine every time you pick her up and stroke her.

Silfa has found her place very quickly as a member of the family, and her bright little face cheers me up whenever I see her. It is hard to explain how much life is dominated by a chronic condition, especially when there is a permanent reminder of the disease in the form of near-constant pain. But having an animal like Silfa around is such a lifeline for me - it allows me to shift my focus away from myself and my daily struggle with pain and fatigue, towards a little bundle of fluff who needs love, care and attention.

I am not the only one who finds the presence of animals therapeutic. Studies have shown that spending time with a therapy dog whilst waiting for an outpatient appointment significantly reduces reported levels of pain and emotional distress http://www.ncbi.nlm.nih.gov/pubmed/22233395. The charity Pets as Therapy (www.petsastherapy.org) is devoted to bringing dogs and cats to sick and disabled people, in order to improve their quality of life.

And it's not just those with physical disabilities that benefit from pet therapy. Those with depression can also benefit from having an animal around (http://www.ingentaconnect.com/content/bloomsbury/azoos/1994/00000007/00000003/art00006)
It is thought that caring for an animal reduces anxiety, helps to structure an owner's day, provides companionship and increases exercise levels, all of which help to improve quality of life. I wonder if the NHS started "prescribing" animals to patients whether they would see a long-term drop in the uptake of antidepressants and other medications?

I remember a wonderful drama that I saw a while ago called "After Thomas". The drama, based on a true story, was about a young Autistic boy whose love of his golden retriever dog helped him to understand other's thoughts and feelings (something that Autistic children often find hard). It's well worth a watch if you can get hold of a copy, although be prepared with a box of tissues when you watch it!

Those are my musings on the benefits of pets as therapeutic agents. I'll leave you with a gorgeous picture of our new cat poking her head through the bannisters...

 

Benefit Shenanigans Part 2

So my Disability Living Allowance claim was rejected. Not surprising, given the government is aiming to reduce the number of claimants by 600,000 when the DLA becomes the Personal Independence Payment. For those of you who have had the good fortune not to have to puzzle through the DLA application process, here is a very short introduction to the criteria on which they assess claimants:

Care
There are three rates for this component:
1) Lower - when you require help for cooking a main meal once a day
2) Middle - when you require help around the house (e.g. with climbing stairs, washing etc)
3) Highest - when you need supervision at night and more extensive personal care

Mobility
There are two rates for this component:
1) Lower - for if you require supervision out of doors (e.g. if you might wander or get lost without help)
2) Higher - if you have severe physical mobility difficulties

I had been hoping to claim the lowest care component, as I find it increasingly difficult to cook a main meal when living on my own, due to the fatigue caused by my condition and the physical limitations (needing to stand for a long time, lift heavy pans etc). For the mobility component I had been aiming for the higher rate of pay because the pain and fatigue I experience make walking difficult.

It's very frustrating when you come home after a particularly difficult day filled with pain (as I did) and discover a letter on your doorstep which dismisses your claim out of hand. I say out of hand because the assessor took less than a week to reach the decision, and made no effort to contact the health professionals (GP, Consultant Rheumatologist and Physio) I had listed on the form. No medical assessment of any kind has been undertaken, and yet my assessor deems that she has "full and proper information necessary to assess my claim".

My position of being denied the DLA without any medical assessment or even consultation with a medical professional is not unique; this recent BBC article highlights that GPs are being flooded with requests for appeals support from disabled claimants who feel that their claim has not been given the proper thought and attention. http://www.bbc.co.uk/news/uk-scotland-22406739

In my case, the decision was not only founded on limited and ill-considered evidence, but the reasons given for rejecting my claim were simply not true. I am aware that my position is complex with regards to the mobility component; as many of you will be aware, sometimes I can walk almost normally, but sometimes I am severely incapacitated by pain and find walking difficult even with the use of sticks. Apparently this does not happen enough of the time, however, to warrant my receiving financial help.

Similarly, although I had ticked that I have physical difficulties with cooking such as lifting heavy pans, the assessor bizarrely concluded that I had "no problems with lifting" and therefore deemed that I could cook a main meal for one person. She also rather patronisingly suggested that if I had difficulties standing whilst cooking then I could "sit down from time to time". Wow, I can't believe that after all those years of university and postgraduate professional training I couldn't have worked that one out for myself...

The sad thing is that, with the help of the DLA I could afford to lease a car (under the motability scheme www.motability.co.uk) which provides low-cost motoring for disabled people. This would be a major lifeline for me, as it would allow me to maintain my independence and continue my PhD. Without this benefit, I will still probably find a way to afford a car, but it will be harder. And while the government are trumpeting their aims to get people back to work from long-term unemployment (due to disability or otherwise), there is less talk of preventing people like me from falling into the benefit trap. Why not invest now in some practical help such that I can overcome the barriers I face and contribute to society, not just take from it?

So following the rejection of my claim, I became one of the many people listed in the BBC article above who trundled along to their GP and asked for a letter of support. I also sent a reply asking for the case to be reconsidered. Yesterday, I received an acknowledgement letter which stated they may take up to 11 weeks to review my case. But I am hopeful this could mean they will consider my case more carefully this time. Watch this space for updates.