TW: suicide, death, euthanasia
Recently I found out that in the Netherlands (and actually some other countries) you can get euthanasia if you have ME. My illness. Since finding this out it has been something I have thought about a lot. There is something kind of strange about finding out that living with my illness is considered so hopeless that you are legally allowed to die.
I have always supported euthanasia, because I believe in bodily autonomy. But I don’t think I’ve ever really thought about it all that much before the last weeks. And actually it is a far more complex subject than simply, yes, I agree, or no, I do not. There are so many different reasons and instances why it may happen. So I’m not here to give a stance on it or not; I just want to explore some of the emotions and thoughts I’ve been having ever since I found out.
Hopelessness
Why do I feel so mixed about it? Well to be honest, it feels almost sick that, in the Netherlands, care for patients with ME/CFS received a 2.3 out of 10 when it was inspected, and nothing much is being done about that, yet it is one of the main reasons why someone would opt for euthanasia.
One of the reasons given for why people with ME/CFS should be allowed access to euthanasia is because there is no treatment for the illness, and it is very hard, particularly if you get very severe ME, to get out of it. And yet, despite this knowledge, there are no significant sums of money going into ME research. Worse than that, the only treatment currently used in the Netherlands for people with ME/CFS is Graded Exercise Therapy and Cognitive Behavioural Therapy, which are known to make people sicker. In fact, whilst this is the treatment that the guidelines suggest, it has also been acknowledged, in cases of people with severe ME getting euthanasia, that this is a reason to allow it. It’s almost as if the legal solution for the lack of care and support given to ME patients is to allow euthanasia. I’m guessing that that isn’t intentional, but whether or not it is, the outcome is still the same.
ME and suicide risk
I can’t help but connect euthanasia in these circumstances, with suicide. People with ME/CFS, and chronic illnesses in general, are at a much higher risk of suicide, and there are many reasons for this. One study in the UK claimed that this risk was sevenfold that of the general population. One of them is obviously the physical and mental symptoms which form part of the illness itself. There is a lot of suffering with an illness like ME/CFS, and it is really hard to endure that, day in and day out, knowing it might never get better, and realistically, it may well get worse at some points. Add to this the lack of medical support for people with ME/CFS, most of whom have been gaslit by doctors over the years, and it’s not hard to see why this might increase the risk of suicide. The reality is that at the moment there are no treatments for M/CFS, and many people live with no medical help, and beyond that, with the knowlegde that their healthcare workers often don’t believe that they are actually sick.
But there are other factors that are very solvable which affect people’s mental health and might impact their decision about whether to live or not. One of those is money. There is a sort of despair that I think many of us with chronic illnesses feel when we think about money. The reality is, being sick is very expensive. Add to that the fact that a lot of us are too sick to work, and money is a constant stress factor. What, for me, makes this so difficult is that I really cannot see how this issue will ever change for me. If I do not get healthier why would this change? I am lucky to have very supportive parents who are able to help me when I need it, but even for me this is a massive stress factor.
Tied into this is the insecurity of housing. Paying rent is very expensive in many places. When you have a very low income, finding accessible housing that meets your financial and sick needs is very, very difficult. So we often end up living in spaces that make us vulnerable. For example I lived for about three years in a house that was falling down and had rats in the walls, which were covered in mould – and I stayed there because it was all I could find that I could afford. Other people I know are unable to get out of their house alone, or unable to access parts of their house without help. And there are people with ME who do not have access to houses at all. ME/CFS is in many cases not considered a priority reason for social/council housing, and that means that people end up living in temporary accommodation or being homeless. None of this is particularly conducive to good mental or physical health.
Insufficient money also means insufficient care. Many people living with ME/CFS cannot afford the care they need, myself included. This means that our energy goes into surviving rather than into the simple things that help our mental health, like seeing friends, leaving the house, having hobbies or doing something fun. And sadly, care support is very expensive, and something that is simply out of reach for many. Even where it is provided, often people with ME/CFS are considered not to need it.
What is important about all of these things is also the chronic aspect of the illness. How can you have hope that your situation will change when you know it is very unlikely that you will ever get better? Why would it change? This is such a difficult thought to sit with. And if you are not lucky enough to have supportive family and friends around you, who also understand the chronic nature of this, and are able to help out, it makes sense that you might feel despair. Even with people around you, the fact that people with ME/CFS receive very little, if any, care, also puts the responsibility of their care onto friends and family, who are unpaid. This makes it very hard not to feel like a burden.
When a study was done into suicide and ME they found that there were three major factors that increased suicide risk:
- thwarted social and medical supports;
- perceived burdensomeness; and
- capability to engage in suicidal behaviour.
What this means is that the people at the highest risk of suicide actually often end up being people with moderate ME, because people with severe ME are often too sick to be able to attempt it.
Returning to euthanasia, it is easiest to get permission for this when you have severe ME – which makes it seem almost to be a legalised version of suicide for those too sick to undertake it themselves. In a way, maybe it is good to have this as an option. But when you look again at the list of things which increase the risk of suicide for people with ME/CFS, many of them are relatively easily solvable. Does it not then seem wrong simply to allow such a draconian solution as euthanasia – rather than attempting to solve some of the practicalities instead?
Having said that, I am still for euthanasia being legal, but when it is possible, in the case of ME, to address many of the reasons that might push somebody towards euthanasia, it doesn’t feel quite right.
What do I feel about my life now?
On a slightly different note, it has been quite hard for me to process the fact that, because of my illness, I could potentially get access to euthanasia. Admittedly, I’d probably have to be sicker, or at least sadder than I am now to access it, but even so, it’s a strange feeling knowing that is how my existence could be viewed: hopeless and depressing. How can I just accept that, and then move on, and not feel some sort of hopelessness that the best the state can offer me is GET, CBT and euthanasia. Obviously, I am being melodramatic, but I am sure you get the point.
If you are feeling suicidal…
Please do reach out if you are able to. If not to friends or family, then to a crisis line, online mental health support chat, or suicide helpline.
And please, keep a watchful eye on those around you. Reach out to friends and loved ones, and support them, both when they ask for it, and also when they don’t. Sometimes, when you most need the help is when you can least ask for it – and having a good support network of friends and family, who don’t consider you a burden and don’t make you feel like one, can make all the difference.
If you need support here are a couple of support line numbers:
Netherlands: Chat of bel 113 of gratis 0800-0113
UK: National Suicide Prevention Helpline UK can be reached on 0800 689 5652
Samaritans Helpline can be reached at 116 123
