I am in such a desperate and lonely situation with what is going on in my life – if you can even call it that. I am 45, living with a condition called Williams syndrome, which has left me with a learning disability and a range of complex mental and physical needs.
I was living with my parents, but sadly they both died 23 months apart, and I was moved into a succession of care homes, in all of which I have experienced unkindness and outright abuse from the staff.
I can see the pressures they work under but I think they are used to residents with various degrees of dementia, whereas despite my needs I come across as more of a ‘normal’ person; in fact, I have above average intelligence.
Now, obviously losing both parents in the space of less than two years would have taken its toll on anyone, but I feel I have never been allowed to grieve properly. I also think all the care workers who have looked after me haven’t understood my condition and they think I’m coping better than I am.
Where do I go from here? How can I look forward to a day when I can be happy again?
— Jo, via email
I am so glad you have written to me. Because my message to you is one of optimism and hope. Things are horrible for you at the moment, and I’m so sorry that’s the case. But they are going to get better. Maybe slowly, but surely, certainly – and irreversibly.
Let’s start with your double bereavement. Dreadful. But the thing about grief, Jo, is that it lessens. Not measurably each day or week or month, but in small and unexpected incremental jolts. One wakes up on certain mornings and, quite unexpectedly, the pain has diminished, if only by a little. Trust me. I speak not only from deep personal experience, but also from that of others.
Now let us turn to your circumstances. You are clearly extremely self-aware so you will know that non-experts can misread the mood of people who suffer from your condition. I suspect your carers have lacked specialist experience or training, and simply didn’t realise the pain you are in. That’s not to excuse for bullying or other mistreatment, but there’s a disconnect here and those looking after you need to be made aware of it.
People affected by WS are supported by multiple organisations, including the Williams Syndrome Association. The safeguarding team at your local authority can help you and I am also privately sending you a list of other groups that can offer you support and help you with the practical issues you face in securing the care (and understanding) you need.
Jo, you have been through a deeply traumatising time. But hold fast to hope. Your grief will lessen. And with some intelligent, targeted intervention from the groups I have mentioned, your treatment in care should improve. Knowledge is not only power – simple awareness can lead to kindness. I certainly hope this happens with you.
Do write to me again and let me know how you are getting on.
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