Chronic illness and Euthanasia.

[LondonLady1980]

I have a chronic health condition that cant be cured and although it can be managed to some degree, the overall effects on my life have been significant. I take three different medications that make me feel ill every day (and they don’t fully control my condition either), I have lost my freedom, I’m very isolated, and I have also lost my independence, my career and most importantly, my peace of mind. I have anxiety and depression (related to my condition) and I also go to counselling 2-3 times a month to try and keep my mood stable but I accept that unless my condition can be miraculously cured, I will never have emotional peace again.

I am only 42 and life no longer feels self-fulfilling or hopeful, but I have calmly accepted that as well as accepting that life isn’t really going to get any better for me.

On the upside I have a wonderful husband and two amazing children all of whom bring me lots of joy and happiness. They are genuinely what keep me going and they give me something to get up for in the morning.

I was talking to my husband the other day about plans for the future and he was talking about his dream retirement which is to travel around America and I said to him that when it comes to that point (20 years or so), hopefully euthanasia will be legal in this country and I will be quite happy to say goodbye to the life that I have and I will feel happiness from releasing him to go and enjoy the rest of his life in the way he wants to without me and my disability holding him back (my condition has massively impacted our current life).

He was really taken aback by this and starting getting all worried about me being suicidal, but I’m not at all. I have absolutely no desire to hurt myself because despite everything I am happy and I would never, ever leave my children, but if in 20 years time things are just as they are now with regards to my health (it will most likely be worse), it won’t be a life that I think is worth preserving and certainly not a life that I will be getting any meaningful enjoyment from.

Quality of life is so important and I can’t imagine carrying on until the day I naturally die when my life isn’t enjoyable due to all the ways my health condition affects me.

My condition has drained me physically, emotionally and mentally, and with all of those aspects of my life in chaos, why wouldn’t I want to say, “Enough is enough” and allow everyone else to just continue on with their own lives and I can finally have some peace?

I’ve had this condition since I was 16 and it’s generally been well managed but the last 6 years have been incredibly tough and my life is no longer recognisable and nor am I as a person really.

The thought of potentially living like this for another 30 years, when just the last six have been enough to nearly push me over the edge, is just incomprehensible to me.

AIBU to have said that when an adult no longer feels ‘needed’ by their adult children it’s not that absurd a concept for them to want to opt out of a ‘life’ where they are controlled by an illness that they can never be free from and one that causes them so much turmoil?

Have you shared these thoughts with your counsellor? That’s a heavy lot to trauma dump on your partner (yes I know it’s op who is unwell..) who if I’d been told this by my partner, I would be significantly anxious re suicidal ideation

Dear OP, I get this absolutely. I have a chronic condition. I'm fighting for compensation but my real hope is that it will care for my child and DP. I'm in horrendous pain constantly and the idea of spending decades like this is horrific. I'm not suicidal but I'd like the idea to choose when I've had enough. I'm around your age as well. You have my love and support.

@PoppinjayPolly if OP is anything like me she's probably very aware of the impact her condition has on her partner and children. I feel guilt on a daily basis and I think your comment is unnecessary.

Older than you, but recent awareness of high risk factor for nasty illness. Actually quite calm about it and realised feel strongly that I want to be here and contribute as long as possible to getting my kids to adulthood, but after that think there would come a moment where I would think I had had enough and that's OK. Not remotely suicidal, but looking at my mum's decline and thinking that I would like to think I would have some control over how I manage any future condition. You have probably been processing this for some time and it's all a logical train of thought; your DH simply has not processed it like you (not least because he isn't living with daily pain like you are). YANBU.

Im so sorry to read this. I agree with you that autonomy trumps all else and people should be allowed to decide this. I absolutely understand the issues raised very well by opponents (I recommend the 'Better off Dead'? documentary on iplayer) and I would have concerns about the timeline of request to implementation but ultimately, for me, autonomy is everything. No-one else has the right to tell you your life is worth living or has value, if your considered and settled view is that it isn't. Whilst the inherent issues with abuse are obviously alarming, I don't think we should not do something because its hard, time consuming or costly to do properly.

My husband is well aware of how hard I struggle with my condition, (emotionally and mentally), he’s seen me be admitted to hospital many times, he attends all my hospital appointments with me, he’s seen me trial medication after medication, he sees me trying to deal with the side effects of the drugs every day, he has seen me change from an outgoing, independent woman with a promising future, to now being a total shadow of that person, and he hates having to see me go through it whilst knowing there’s nothing he can do. He knows that apart from him and the children, there is nothing in my life that brings me joy or a sense of satisfaction or achievement anymore…..I literally am just existing, not living.

As it is, I live for them and my focus is purely on them. I don’t have any hopes or dreams for myself because I know how my health limits me (and will always limit me) and although I am fine with that at the moment because my children are young and they need me, when they’re adults, that isn’t going to be enough for me.

If I’m not able to have a life that brings me fulfilment and happiness because of my health, then I think it’s ok to say “I don’t want to live like this anymore.”

No, you are not being unreasonable. If the law doesn’t change then I don’t think you are at all unreasonable for booking one last lovely family holiday to Switzerland.

I agree with you OP, and I'm sorry you are experiencing these health difficulties.

I am a huge proponent of euthanasia, why should grown adults not have this option, whatever their reasons? You are the only one who knows your life.

Some degenerative illnesses are too cruel and yes medical assistance in dying should be available.

Just for clarity, my condition isn’t degenerative or terminal (although an episode when it flares up can be fatal). It’s more just the case of having a condition that can never be cured, that affects me every day, has stripped me off everything I had and one that means I don’t really have a future to look forward to either.

Well I do have a future…..but it’s just Groundhog Day. One unhappy day after another with no hope for any respite.

It depends what the condition is really, for me to comment.

I have a chronic condition which fortunately has been helped massively by surgery, prior to this I said I would've quite happily gone to sleep one evening and not woken up the next day. It's hard to explain as I wasn't suicidal; but I wouldn't have been upset for that to be it.
What I'm trying to say is I totally get where you're coming from @LondonLady1980 💐
I hope they make some advances with treatment for you and things improve.

I am in a similar position. I will likely need to end my life because needing to have carers or spend significant time in hospital actual exacerbates my very painful allergies. It’s the ultimate irony that the health care system is the thing least capable of caring for me.

however, I still think you need to talk to your counselor about your thoughts. I am still planning to enjoy my retirement. My dreams of traveling with DH are unlikely to come to fruition, but we are making new dreams together.

One thing we have thought about doing is going through the effort of traveling once and just staying in one city in one place for 3 months. it would be a more immersive experience and I would only have to expend the energy and take the highest risks once time. We could also do more research and find a rental that met our needs. We picture days just living, sleeping in, having lunch at a cafe and people watching. Not trying to do everything all the time, just living in a new space and experiencing it.

disability means shifting, it doesn’t have to mean giving up. There does come a time where it is time to stop fighting, but don’t stop too early.

As in you think it’s the condition itself that matters as opposed to how the condition affects the person’s quality of life?

That’s exactly how I feel. I am not remotely suicidal and I have no desire to die or any wish to harm myself or anything like that.

But at the same time, my mind and my body is exhausted from living like this and the thought of having to live like this for the rest of my days is unimaginable.

@LondonLady1980 it matters because in some areas there is huge progress being made. Is it an autoimmune condition (of which there are so many) because Car T cell technology is likely to be a game changer.

No, it is nothing like that.

The actual condition (drug-resistant epilepsy) is hard enough, but it’s all the other ways that the condition impacts me which is what is slowly destroying me.

The impact it has had on my emotional and mental health are in some ways far more damaging to me than the seizures have been.

@LondonLady1980 any surgical options? What was the highest resolution MRI? Dh had drug resistant epilepsy; found to have a cavernoma (small cluster of veins) which was successfully excised.

Op I get you, I have mutiple chronic illnesses and when the time comes when my kids are set in life, this to is my plan. I don’t think your unreasonable at all.

I'm so sorry. I am in complete agreement about the importance of quality of life. The experience of having both my parents live to a great age but at the very end not having the quality of life they had enjoyed previously, and all that comes with that, has really made me think hard about what I want from the years to come. I can see no benefit in just surviving, not for me, not for my loved ones, not for society as a whole. I hope we might have found a good solution to assisted dying if and when I might want to go down that route.

I’ve had many MRIs and they all show a structurally normal brain - they have no idea why I have seizures (although I know that’s the case with a lot of epilepsies) and they don’t know why I'm not responding to medication either.

I genuinely have come to terms with what my life has become and I’ve accepted that my best days are behind me, I guess I’m just a bit shocked that my husband was so surprised that someone would choose not to live my life if they had the choice.

I’m sorry you are in a similar situation xx

i hope there are more helpful neuro and surgical options in your future. do ask about the strength/quality of the MRI machines used.
but i fully understand your view and that the view is not necessarily linked to depression or suicidal ideations.

I do agree. I can't understand why anyone would want to live past 75-80 IMO. I know there are some reasonably healthy, and fairly mobile people over 80, but the reality for most is that they will have multiple health ailments, failing sight, failing hearing, less mobility, aching joints and arthritis, heart and internal organ problems, increasing loneliness, and dementia.

I have seen so many older people I know who (because of various ailments that go with ageing,) have got to the point where they need a carer 3-4 times a day (for everything, from helping them go to the loo, to showering them, cooking their meals, doing their washing, and general housework.) These people (often over 75) can't get out of the house on their own, let alone go anywhere/socialise/go for a walk in the countryside or by the beach. There is almost zero quality of life, and I honestly wonder 'what is the point?'

Even though some will not be like this, at 75-80, more people will be than not...

Also, it's understandable that if someone is diagnosed with something (like cancer) in their mid 60s or older, that they refuse treatment, and just take it as it comes, dealing with the pain and suffering (at the end) with painkillers, and palliative care, or even going to Dignitas.

I have known some people be diagnosed with cancer, and have multiple rounds of chemo, and multiple surgeries (like parts of their bowel taken away, and other parts of their body,) and they suffer for several years with no quality of life at all, only to just die anyway within a year of stopping the treatment. I thinks it's worth the fight if you're middle aged or younger, but I have seen too many people (60 or older) ravaged by cancer treatment, and surgeries, and they and their loved ones have wondered if it would have been better to have just left it, and 'let nature take its course.'

Same with painful chronic illnesses that cause misery and pain and suffering. You do have to question quality of life. We don't allow our pets to suffer - and too right! But why is it we allow this in humans? What dignity is there in suffering and pain? We should be allowed to choose to die.

There is (as you say) no point in just surviving, and just existing. I would feel like a burden on everyone, and would have no quality of life. If I couldn't get out of the house on my own, I couldn't feed myself or go to the loo or have a shower by myself, and I was just existing, I would sooner just quietly go........

I dont agree with an arbitrary age...my neighbour just turned 100 and is frail but enjoys life. That's 20 years past your cut off @Ved . However I am in full agreement on the general principle. I dont think life is always better than a peaceful, controlled end.
I think opponents come at in three ways

1. Religious...fair enough for your own view but not to be imposed on non believers
2. A belief, even if not religious that life is essentially sacred and should be protected above all. Right to Life is first on the list of human rights. However, as above, if you think self determination is key, you should also have the right to death.
3. The difficulties of misuse...there have been worrying cases in Canada using their 'fast track' process...dubious interpretations of 'terminal illness' for anorexia for example plus the obvious ones about pressure from outside..self imposed feelings about being a burden etc. However, with a robust system, proper investment in a specialist court for final say and a fundamental acceptance that people should have the choice to not be a burden no matter how much their carers dont mind, we should not shy away from it as 'too difficult'