Forum

The things people say...

Ok, so on the school run today the subject (not sure how it started) was dying. One of the younger mums, who works as a carer and knows I have MS, came out with, “I want to die before I need a carer. I couldn’t live like the women I work for”. (One of her patients has severe disability from her MS). Now how am I supposed to take that?! I think she’s just a bit naive and I’m trying not to be upset by it, but it was a bit careless! What other inconsiderate things have you heard?! X

I wouldn’t put too much store in comments like that. When it comes down to it, the need to maintain life is very strong and you know yourself that it is amazing the things people learn to live with. As she gets older she will probably change her viewpoint so don’t let it upset you too much, I think it was probably just a throw-away comment.

I think nearly all people with ‘invisible’ conditions like MS have had the ‘but you don’t look sick’ comment thrown their way. Or people who don’t understand the difference between tired and fatigue and accuse you of just being lazy - ‘if you just got up and did something you would feel better’ is another one I’ve heard.

JBK xx

I think!! A. She should learn the art of empathy. Or B. Get another job. Sorry lol, couldn’t help myself…she has a lot to learn in life. Try not to take it too personally its her problem. xxx

A vet I once worked for said to me “anyone who is unable to wipe their own bottom should be put out of their misery”. I was absolutely horrified and actually speechless which for me is totally unheard of! That was just one of her many throw away comments - needless to say I don’t work there any more.

Think the young mum needs to engage brain before opening mouth.

Dinks. I don’t know about you but these so called intelligent people who come out with comments like you’ve just quoted send a chill down my spine…scary!!

Blossom you are so right. I decided there and then I no longer wanted a) to work there b)for her to have any say in any of my animals treatment. I moved jobs and moved the care of my animals to different vets. So often I have found that intelligent people lack common sense. Seems to me that common sense is anything but common!

hi

i think the same as carer-i wanted to die before i need a carer. HOWEVER i have had carers for 3 months now to help me with basic daily tasks and my reality is that my kids are still with me instead of in care. its easy to think what u would like when u r not faced with the reality. we all have thoughts re what we want/like but these change when faced with ur own reality. i was a nurse and looked after folk with severe ms. NOTHING can prepare us for what we face because we r all so different and cope in our own unique way.

may i be brave enough to suggest that we are too sensitive re our ms. folk dont have a clue re how it affects us-we struggle to understand it ourselves, as this board will prove! so the general public cant possibly understand. as others have said-let it go-shes just human, like the rest of us… ms is far down the pecking order of illnesses/disabilities to cope with-its confusing and scares folk-its easier (for others) to give their ignorant opinion re it and then pop money in a.n. other charity box…that will make them feel good about themselves

just my thoughts…have a good day all ellie

Thanks guys! I think she’s just very young and naive (not meaning to be condescending, but she hasn’t really lived yet - except having her child quite young!). Maybe it will change, but I have every intention of hanging on as long as possible…the only thing that would change that is a non-existent quality of life or constant pain. We all know that MS is unpredictable and I would hope there will be plenty of good stuff I between the bad. I’m not writing myself off just yet! X

Choccyholic - quite right - onwards and upwards. Just goes to prove what I have always said “youth is wasted on the young” and we really can’t put an old head on young shoulders. Here’s to more good stuff than bad.

Just overlapped with you Ellie! Totally agree with you x

There are a lot of people who would choose to end their lives if they ended up dependent on other people for basic tasks. I’m not sure where I’d draw my line…I know I wouldn’t like to be dependent on a ventilator or left a vegetable. I know my idea of hell would be to be fully aware and unable to move or communicate.

Perhaps this woman would actually take her own life or travel to be euthenised if she ended up dependent. There are many people who commit suicide or choose to end their lives because of disabilities or illnesses and many people who choose to discontinue treatment knowing it will hasten or cause their death. Perhaps she genuinely would end her life if she were profoundly disabled. My grandmother chose to stop dialysis treatment knowing she would die within days as she was just too fed up of the dialysis routine and her life the way it was with endless treatment and tests and feeling unwell.

I think it’s a case of each to their own. As I said, I’m not sure where I’d draw my line for sure but I have an idea. None of us are sure until we are there but I’d say most of us know what we would and wouldn’t like to live with.

Ah the arrogance of youth that they think they know all the answers.
It’s hard to know how you would react to things until they actually happen to you.

When I look back 20 years to my newly dx self I had some very definite ideas about what would make life intolerable. If I’d had a crystal ball and been able to look ahead to today I think I might have run (I could still run in those days!) screaming into the hills. However life throws things at you and you catch them. What would make life not worth living now?
I can’t answer that question because life keeps throwing and I keep catching.

Jane

Saw a poster on Facebook which said “Don’t make fun of people with disabilities. Whether it’s Neurological, Mental, Physical and more. They are people too, they have feelings. Like and share if you agree”. I’m fine with all of that nice that people do think about those with invisible illnesses. It’s the last line that gets me though “Stop Discrimination Against Special Needs” - since when have we all been special needs?

Just to put another perspective on this. Whilst that young mum has an MS patient in her care (and so could have been a little more sensitive in the circumstances!) you don’t know what conditions her other patients have. My sister is a carer and has patients with Huntingtons Chorea, Pick’s Disease, severe brain injury etc who have to refrained, protected and at times physically restrained from taking their own lives. She also cares for patients with PVS who have neglible quality of life. She says the same thing - and she is a fantastic and very empathetic carer who gives 110% to her patients. TBH there is a line that I would not like to cross - albeit that we don’t know where our ‘line’ is until we meet it. The young mum that you describe is talking of her personal situation and her preferences - and not those of her patients. Everyone has a different tolerance level and these perceived tolerance levels can change over time and with diminishing health. Often, factors such as level of support from family and friends etc can have a greater bearing than degree of disability.