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Original poster

Anyone else had / have a parent with MS?

2 replies

Forestmumlondon · 15/04/2025 15:20

My Mum had it, she died last year early 70s from complications from the MS (a blot clot).

I loved my mum and we were fairly close but I feel like I never came to terms with the fact she was disabled (she was my whole life obviously getting progressively worse). Other people I hear of with a disabled parent say it made them kind / patient / caring etc.

I feel like with me it went the opposite way! I got frustrated with her, impatient, not always kind, embarrassed when we were out and a fuss was made regarding accessibility stuff / people looking etc, things became increasingly difficult when out, she often didn't keep up with conversations (I assume brain fog, fatigue, tablets didn't help this).

Interested to hear what others experiences of having a parent with MS (or similar) have been.

I have no siblings (again, mainly because my mum didn't think she'd be able to cope because of her health) so I just have no other perspectives. I feel like it made me think I'm a horrible person.

OP posts:
NoctuaAthene · 15/04/2025 21:28

Hello, 👋 fellow MS daughter here. What age were you when she was diagnosed? My mum had symptoms/relapses from before I was born but was eventually diagnosed when I was just starting secondary school, and is now a similar age to your mum so has been gradually progressing ever since really, now a full time wheelchair user with no use of her legs and various other problems with continence, fatigue, cognition etc. It's very, very hard and I don't think you should beat yourself up about it for feeling that way, particularly when you must be grieving your mum too. I've never understood this narrative that disabled people and their carers are saintly and transformed in a positive way by their experiences and all that, we're all just human beings at the end of the day struggling with pain and anger and grief and practical difficulties, of course we're not always our very best selves, sometimes we're horrible to one another, of course we wish it was otherwise, of course we're occasionally unreasonable and rude to others when things get hard. I think anyone that pretends otherwise is either outright lying or a veritable saint TBH.

I recognise really well that feeling of embarrassment, I was a teen for some of my mum's worst bits and it's so hard to try and be the better person and overcome the shame when she's having continence issues in front of your friends or falling over and slurring at parents evening so everyone thinks she's drunk, however much you know she's not doing it on purpose. In the late 90s/early 2000s there was a lot less understanding and tolerance of disability issues than today and we both experienced some horrible comments from colleagues, school friends, people on the street, bullying really. At least I like to think it's maybe a bit better today both in terms of treatment options (there was very little on offer for my mum when diagnosed) and also general attitudes and awareness of disabilities so maybe a family today going through the same thing would have a marginally better experience?

It's such a cruel illness though, did your Mum have a steady decline or more peaks and troughs? My mum has always raged and been in denial and grieved every single drop in function, resisting to the hilt any more mobility aids or help or loss of independence, usually holding out until some kind of dramatic crisis (notably once falling in the bathroom when she'd been repeatedly warned she needed grab rails and a shower seat, cracking her skull on the sink and causing a brain bleed requiring emergency surgery, on Christmas day Sad ). Rationally I can see why she's like that and emphasize but also it's bloody hard constantly dealing with the fallout and being kind and patient and all that stuff you just have to do, when you're also quite angry at the person for being so bloody (literally!) stubborn.

All the words of wisdom I have are you have to try and accept the different paradigm and relationship such as it is/was and that you just can't ever have the kind of mother/daughter relationship others get to experience, which is very sad. Be kind and gentle to yourself (none of that I'm a horrible person malarkey) and eventually you do come to remember the good times alongside the bad and can look back on some happy memories without quite such a level of intrusion of the bad. I've had some counselling to try and work through all this which was somewhat helpful, at least validating if nothing else. Would be lovely to hear from some other MS kids in a non judgemental space if they're out there?

Original poster
Forestmumlondon · 15/04/2025 21:56

NoctuaAthene · 15/04/2025 21:28

Hello, 👋 fellow MS daughter here. What age were you when she was diagnosed? My mum had symptoms/relapses from before I was born but was eventually diagnosed when I was just starting secondary school, and is now a similar age to your mum so has been gradually progressing ever since really, now a full time wheelchair user with no use of her legs and various other problems with continence, fatigue, cognition etc. It's very, very hard and I don't think you should beat yourself up about it for feeling that way, particularly when you must be grieving your mum too. I've never understood this narrative that disabled people and their carers are saintly and transformed in a positive way by their experiences and all that, we're all just human beings at the end of the day struggling with pain and anger and grief and practical difficulties, of course we're not always our very best selves, sometimes we're horrible to one another, of course we wish it was otherwise, of course we're occasionally unreasonable and rude to others when things get hard. I think anyone that pretends otherwise is either outright lying or a veritable saint TBH.

I recognise really well that feeling of embarrassment, I was a teen for some of my mum's worst bits and it's so hard to try and be the better person and overcome the shame when she's having continence issues in front of your friends or falling over and slurring at parents evening so everyone thinks she's drunk, however much you know she's not doing it on purpose. In the late 90s/early 2000s there was a lot less understanding and tolerance of disability issues than today and we both experienced some horrible comments from colleagues, school friends, people on the street, bullying really. At least I like to think it's maybe a bit better today both in terms of treatment options (there was very little on offer for my mum when diagnosed) and also general attitudes and awareness of disabilities so maybe a family today going through the same thing would have a marginally better experience?

It's such a cruel illness though, did your Mum have a steady decline or more peaks and troughs? My mum has always raged and been in denial and grieved every single drop in function, resisting to the hilt any more mobility aids or help or loss of independence, usually holding out until some kind of dramatic crisis (notably once falling in the bathroom when she'd been repeatedly warned she needed grab rails and a shower seat, cracking her skull on the sink and causing a brain bleed requiring emergency surgery, on Christmas day Sad ). Rationally I can see why she's like that and emphasize but also it's bloody hard constantly dealing with the fallout and being kind and patient and all that stuff you just have to do, when you're also quite angry at the person for being so bloody (literally!) stubborn.

All the words of wisdom I have are you have to try and accept the different paradigm and relationship such as it is/was and that you just can't ever have the kind of mother/daughter relationship others get to experience, which is very sad. Be kind and gentle to yourself (none of that I'm a horrible person malarkey) and eventually you do come to remember the good times alongside the bad and can look back on some happy memories without quite such a level of intrusion of the bad. I've had some counselling to try and work through all this which was somewhat helpful, at least validating if nothing else. Would be lovely to hear from some other MS kids in a non judgemental space if they're out there?

This is so nicely written, thank you.

My mum was diagnosed a couple of years before I was born I think, and it's been a mostly steady decline since then (I think she had a couple of relapses when I was younger, and there was a hospital stay a few years ago for urine infection and that was the end of her walking). She totally lost use of her legs about 6 months before she died and was wheelchair bound then. I think her death could have been prevented but that's another story!

Glad to know I'm not the only one who struggled with it!! I remember saying to someone I met with a mum with MS 'do you ever wonder what they would have been like without it' and I was so shocked his response was 'you should never think about that' - like it was disrespectful or something.

My mum was ok with the equipment etc and hardly ever complained (especially in the later years). I think she found it hard when she was visibly less disabled (ie. Just walked stick) but still had lots of fatigue and other invisible symptoms, as people probably didn't cut her as much slack then.

That sounds hard to see you mum go through that especially if she is resisting the help till it comes to a crisis point.

Ahh it's such a horrible disease

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