Mum has denied DSis’s disability her whole life - I don’t know how to deal with it anymore

[sergkuchkin]

NC for this because it’s quite identifying.

My DSis (mid-30s) has a disability that affects her mobility and some aspects of daily life. It was diagnosed when she was a toddler, and she’s always had medical support for it. But DM has spent her entire life pretending it doesn’t exist. She refused to let DSis use mobility aids when she was younger, insisted she was “just being lazy” when she struggled, and basically gaslit her into believing she wasn’t disabled. DSis has always been quite quiet and went along with it, but now as an adult, she’s starting to really struggle with the impact of not having the right support growing up.

DM still won’t acknowledge it. She gets weirdly defensive if it’s brought up and acts like we’re making a fuss over nothing. She won’t talk about adjustments that could help DSis and acts like it’s all in her head. It’s so frustrating because DSis is now trying to navigate adulthood with a disability she was never allowed to acknowledge, and it’s making life really hard for her.

I’ve tried gently bringing it up with DM, but she either shuts down the conversation or gets huffy and starts on about how she “did her best” and “didn’t want DSis treated differently.” I get that she probably thought she was helping, but the reality is that DSis was treated differently just in a way that made things harder for her.

I don’t know what to do. Has anyone dealt with anything similar? I just want DSis to be able to get the support she needs without DM making everything so difficult. Would love any advice on how to handle this.

TIA.

Maybe stop being so gentle about bringing it up. Be clear and factual. And don’t rely on her to change her mind or suddenly wish to help. Do all you can to support your sister yourself in practical and emotional terms.

You sound like a very loving sister ❤️

Presumably your sister doesn't live with your mum anymore? Or does she? Sorry I'm struggling to understand how your mum is preventing your sister from getting support with her disability now?

Does she still live with your mum? What adaptations has she been denied? Did she not have an ot/sw/school to challenge your mum as a child?
You could maybe support her to self refer to adult services?

Do you mean that your sister is struggling with the emotional impact of growing up with a mother than won’t acknowledge her disability or that she is struggling with the practical aspects of her disability due to being denied aids to help her.

I’m very sorry OP, but your mother neglected your sister for refusing to get her the help she needed. She may say that she did “the best she could”, but that’s simply not true. For her own reasons, which are frankly ableist, she denied your sister assistance.

My Gran did this to my aunt. My aunt was therefore dead before her 40th birthday having never really lived.
My advice is to leave your mum out of it. She’s a dead weight and a lost cause. Support your sister to get whatever help she needs and live her life.
I wish my family had been able to break my aunt free of my gran. She should still be here now.

Your Sister is in her mid 30's, is there a reason she cannot access the support she needs without your mum's involvement?

Why are you directing your attention toward trying to change your mum's mind rather than helping your Sister?

Clearly your mum has been pretty awful wrt your sisters disability but having denied it for so many years she is unlikely to change so your Sister should do whatever she needs to do to make her life easier now.

She doesn’t live with DM anymore, thankfully, but the impact of growing up like this is still huge. She was denied things like mobility aids, physio beyond what was absolutely necessary, and even small things like special seating or adaptations that would have made daily life easier. DM was very much of the mindset that if ignore something, it goes away.

There were professionals involved when we were kids OTs, physios, teachers but DM was very good at downplaying everything. She’d act like they were overreacting, insist that DSis was fine at home, and basically just dismiss anything she didn’t like. DSis was also very quiet and never wanted to “cause trouble,” so she didn’t push back.

Now as an adult, DSis is realising just how much harder things have been for her because of it. She’s considering reaching out for support, but she’s been conditioned to feel like she’s making a fuss, so it’s a struggle. I think you’re right that a self-referral to adult services could be a good step I might offer to help her look into it.

My brother had an accident as a child that resulted in life changing brain injuries. My mother never wanted him treated any different but also she never allowed him to grow up and become independent. He lived with my parents all his life. When they died he was totally lost. My advice to you would be that you have to put your sister first despite the upset it will cause with your mum for the sake of your sister. It is very difficult to get things put in place from Social Services, etc when nothing is documented from an earlier age.

If she doesn't live with your mum anymore then stop banging your head against that wall.

Just support your sister and leave your mum out of it.

My friend had similar with her entire family. She is profoundly deaf and any thought of using sign language was rejected. Throughout her entire childhood my friend felt isolated and alone. They still haven't bothered to learn BSL, so my friend no longer has anything to do with them. Maybe your mother needs it spelled out to her that she risks losing her daughter if she continues to ignore her daughter's needs.

I'm usually kind to mums because life isn't easy for them - was your mum a single mum?

How old are you both?

I'm sure it was tough but enough is enough.

I'd be saying, either get on fucking board, or we're cutting you off. Your sis deserves the right support, and it's high time she apologises, goes to learn about your sisters disability and makes it up to her.

Yanbu x

Is it something like cerebral palsy where you mother could feel guilty (she shouldn't but might) or feels it's her fault?

You could say to your Mum 'if she'd had diabetes would you have refused to give her insulin?' IMO your Mum owes her an apology, but save your energy for supporting your sister.

Please. Support her getting counselling she isn't bothering anybody , I have a lifelong disability I know a few people who were brought up like your sister the default seemed to have been to "act normal" to fit in, this mindset really affects people living with disability. Can your sister access an organisation for her specific disability? I'd get her to do that and ask about councillng

Your mum is a lost cause nothing will change her thinking .but actually her opinion doesn't matter anymore I'm sure she isn't a bad person just misguided, but your sister matters now.

Your mum needed counselling to help her accept the painful truth. She is in denial because she can’t face her pain. I’m so sorry. Is it too late for her to get counselling?

I agree, leave your mum out of it. It won’t make any difference and she may genuinely have done what she thought was best, and the denial may be her realising she messed up- it’s painful as a parent to know what you thought was your best has actually damaged your child.

remember life was very different 30/40 years ago. The internet and access to information wasn’t around like it is now. She may not have been able to google the condition and figure out the best approach. Many people thought a “label” would hinder a child, disabled often meant special school and not being given the same education, jobs etc. she may have been thinking about bullying at school over her sticks. A lot of people had the mentality that if you treat as normal they would have to learn to be normal, “give in” to help and you’d need more and more help.

so I don’t think rehashing all that will help. Other than make your mum relive all her mistakes and every wrong decision.

help your sister access assistance now. What’s done is done and you need to deal with now.

I’m so sorry to hear about your brother that must have been incredibly tough for him and for you. That’s exactly what I worry about with DSis. DM has always acted like she was helping by treating her the same as everyone else, but in reality, it’s just meant she hasn’t had the support she actually needed.

I know you’re right that I need to put DSis first, even if it upsets DM. It’s just hard when she’s spent her whole life making DSis feel like she’s being dramatic for even acknowledging her disability. I also hadn’t really thought about how difficult it might be to get things in place now because there’s so little on record thank you for pointing that out. I think I’ll start looking into what support is available and encourage DSis to push for what she needs.

When your needs have been neglected, and your distress silenced, from an early age it can be so difficult to learn to advocate for yourself. My heart goes out to your sister. She is so lucky to have a loving sibling like you on her side ❤️

As well as reaching out to state funded services is there a 3rd sector/ charity / organisation linked to the diagnosis. These organisations can be very very valuable in providing information and support to help you both find the right path forward.

I think it’s very probably true that your mother thought she was doing the best thing for your DSis. Times and attitudes to disability have changed and she was probably anxious not to make your DSis stigmatised or labelled as "different". DM was probably wrong, but there’s no point in rehashing your DSis's childhood now, or trying to deliberately make your DM feel guilty. But DSis is now an adult and you can support her in getting whatever help she needs. You can also tell your DM firmly that it would be very wrong of her to try to make DSis feel guilty about this, or as if she’s making too much fuss.

As others have said, there is very little to be gained by trying to get your mum to accept she made serious mistakes. Even if she did accept it, it wouldn't change the past. Her more likely response though is to double down, which will potentially cause more upset to your sister.

Focus your attention on your sister and getting her practical help now. I also wonder if it's worth her seeking some therapy? It must be quite difficult to deal with the idea that a parent, through neglect, has caused physical harm/created physical limitations to her life.

Put your energy and efforts where they will be productive - support your DSis, encourage her to get help, encourage her to get therapy. Don't try to smooth things between your DM and DSis, that's not your battle to fight.

Your not going to change your mums mindset. I wouldn't even try. Don't bother trying to convince her ect, just focus on supporting your sister

Very similar within our family but not a physical disability.

My sister is autistic. Was diagnosed as a small child and they basically said she was the person behind the person with autism. So she had a touch of it ( that's how it was relayed to me )

Mum point blank refused to acknowledge it. Was advised to send sister to an SEN school, mum wouldn't as she didn't want her to be different or get picked on...... but she wad picked in anyway and didn't receive the support she needed growing up. We all knew and were told not to mention it to her. Sister had no idea until she was in her 30's. She's no contact now

I was diagnosed in my 30's too, my 10 year old a few.months after me and our mum still won't acknowledge it.

Funny thing is she's clearly ND herself

I do think you’re right that DM thought she was doing the best thing at the time. Attitudes were definitely different when we were growing up, and I can see how she might have thought she was protecting DSis. But the reality is that it’s left her struggling now, and that’s what we need to focus on.

I don’t want to make DM feel guilty I just need her to not stand in the way while DSis gets the support she should have had all along. I think being firm with her is going to be necessary, because she has a way of making DSis feel like she’s being difficult whenever she tries to advocate for herself. I just hope DSis can push past that and go for what she needs.

What is or is not on record shouldn't matter. Child notes were often not kept once the child turned 18. Please do not give another thought to your mother and her reactions and opinions. Start with your sister's GP and social services and go from there. I am not saying that your sister's background and emotional needs are less important or should be ignored but often getting practical help can immediately improve a sufferer's emotional state and make them feel more independent and valid as a person.