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by some promoting the assisted dying bill that those in opposition are only against the bill because they cling to outdated principles ("dogma", as Lord Carey calls it) and place those principles above their compassion for fellow humans.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.