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Bobbie – “People judged me when I didn’t fawn over my physically disabled sister in the way they expected”

My sister is only one year older than me. When I was born, in spite of a very difficult birth and a spell at Great Ormond Street as a newborn, she hadn’t yet been diagnosed with any disability. Everyone thought she was just slower at crawling and moving than other babies.  The story goes that it wasn’t until I crawled across the room one day that she just followed me. But when she did start moving, it became apparent that she suffered from a severe disability meaning that use of and control of her legs was very hard. She would never walk and the related spasms would cause her lifelong pain.

The differences between us became clearer to her as we got older

We went to different schools to start with. And a lot of my family social life revolved around the wonderful schools for the disabled that she attended locally. My family and I spent time fundraising and trying to save these schools when they were eventually closed in the 90s. Through this, I made life-long friends both with my sister’s fellow pupils and their siblings.

Due to the school closures, and my sister’s eternal wish to be ‘normal’ she moved to attend the same school as me from the age of 6. She was also moved to be in the same year as me, though a different class. I was proud to be able to see her and spend time with her and help her. But things became so difficult as the differences between her and others (particularly me!) became clearer to her and we all got older.

My sister would steal and lie. She was aggressive and violent

My sister isn’t learning disabled. But her behaviour is very changeable and at times very challenging. She would become very frustrated quickly and had a huge temper. Powering herself around in a wheelchair all the time also made her very strong. And I was always told never to fight back. That it would look bad if I, the able bodied one, managed to hurt her. I was just supposed to run away (I guess I had that on my side – an ability to run?) or take it. I learnt to shout and scream really loud, and just to stay out of her way.

To get more and more attention she started acting out. Stealing, lying, being aggressive – both at home and at school. She’s always been so focused and determined on being ‘normal’ and feeling hard done by – quite rightly, I suppose!! – that she struggled to make the most of her situation. This is hard to live around.

As we got older, her behaviour became worse. And she became more violent. Her behaviour became harder to control. She got expelled from several mainstream and specialist schools and turned down some of the most amazing opportunities that came her way. At the same time her lying and stealing accelerated. I could rarely go out in our small village without someone telling me what she had most recently stolen/ lied about… it became worse and worse, and her actions ended up costing my parents a lot of money time and again. And it was money they/ we didn’t have. She just couldn’t control herself. By this time she had been diagnosed additionally with ADHD, but largely refused treatment – for this and all other conditions.

I stopped having anything to do with her

By the time I left home to study at 18, I was ready to not come back. But I did. It was worse by then. I moved away from home for the last time when I was 22, I was ready to never come back. I’d realised that my being around made things worse. It made my sister’s lack of ’normality’ or ‘opportunity’ clearer to her, and made her more hateful, aggressive and angry. She had become so used to the world feeling sorry for her. Letting her get away with anything (and she really pushed on that!) and helping her with whatever she needed… that she thought the world span around her. She could be the sweetest, most amazing person. And the next moment she could terrorise people – including my grandparents and parents. And our friends.

So I just stopped having anything to do with her. And she got a bit better. It was only when we had to see each other (weddings/ funerals) that it became difficult. Until I arrived at my own wedding, I didn’t even know she was going to show up.

I felt really angry – and guilty. Therapy helped.

And you know what? I was angry too. Really angry, with the world, with how hard things were for my parents etc. I didn’t realise this. I didn’t realise how much guilt, anxiety and anger I was carrying around until I had my own child. The anxiety I had about childbirth and the thought of having a child like my sister drove me insane. Exacerbated by medical complications in the pregnancy and birth, I was really struggling and so, for the first time, I sought out a therapist. This is when I realised how much guilt I was carrying around.  And what it was doing to me – and what I in turn was unintentionally doing to friends close to me as well.  I was constantly feeling bad about what I had that my sister didn’t, focused on why I didn’t deserve it, often self-sabotaging good things that came along – and still being inexplicably angry.  I had this immense need to have to look after everyone else, take care of everything as I had when I was growing up – but I would take on too much, push myself to breaking point.  It would happen all the time.

At the same time as I found therapy, a good friend of mine – also a sibling – lost her sister suddenly.  In dealing with this tragic, horrific and devastating loss, we both found Sibs. Sibs helped me realise that, for someone in my situation, I was relatively normal. It also made me feel lucky. My situation could have been a lot worse. My sister is a pain, but I love her. And she is still here. Many siblings I know would give anything to spend more time with a sister or brother who was taken from them way too soon.

My advice to anyone – but particularly to siblings, is to know that it’s not your fault. You don’t have to feel guilty. And you can do what you need to do and live your life how you need to. This may mean having the closest and most amazing bond with your brother or sister. I know lots of siblings who do. But it might mean running away, hiding, and coping the only way you know how – which is what I did. You don’t need to feel guilty about this if that is what you want and need.

You also don’t need to accept other people’s judgements of your relationship with your brother or sister. I’ll never forget the judgement on people’s faces when I didn’t fawn over my sister in the way strangers expected. What they didn’t know was that if she could raise her fist and punch me – knowingly, because remember, she wasn’t learning disabled – she could sort herself out in public without my help. And if she could spend thousands of pounds of my parent’s money various crazy ways, she could go without something she very publicly demanded of me.

My sister and I get on okay now. She has finally grown up and she is happier. But the legacy of the decades she spent behaving so badly and not looking after herself is stark. My next challenge is trying to find the fine line between helping her, and looking after myself and my own children. I know I have to help – and I want to, but every decision to get involved scares me and I enter a conversation ready for battle. How do I help without getting too sucked in – and potentially hurt again?

All names have been changed.

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