When you start reading about details of Williams Syndrome symptoms in adults, you begin to pick up that anxiety is one of the more common symptoms shown by many adults.
Anxiety – doesn’t sound too disturbing does it? Maybe a little nervousness, maybe some uncertainty in difficult situations? I admit I wasn’t too worried to read this and thought a little extra loving care would sort the problem should it arise.
Nothing prepared me for the scale of the symptoms that appeared.
Linda started hearing voices, a blast from the past. Someone who had bullied her at school many years ago now re-appeared as an intense but invisible enemy.
She would shout at this enemy, this ghost, yelling, swearing, desperate to defend herself and obviously in great distress at the insults she believed she was receiving. She would even punch out violently – and woe betide you – me – if I just happened to be standing in the wrong place as the punch lashed out…
Is this a common manifestation of anxiety? Have you seen anything like this in your Williams person?
Now for Linda, this was almost certainly triggered or at least exaggerated by the trauma around the death of her father. We all grieved and it affected her in a particularly vicious way.
We sought medical help and support that, thank goodness, really did make rapid improvement in Linda’s symptoms.
But this week we’ve seen the symptoms return, the voices, the punches, the disturbed sleep…
On reflection, it’s very likely to be due to the death and funeral of her aunt bringing back memories. Understandable really.
We’ve encouraged Linda to try to talk, to tell us what she feels but this part of her life seems intensely private or maybe she’s unable to externalise these feelings… Lot’s more hugs are prescribed.
Now I’ve no idea how common this is as an experience. I certainly don’t see people describing such outbursts as Williams people are almost universally described as so cheerful and friendly.
What really happens in your family?
My adult sister with Williams syndrome had similar psychotic symptoms following the death of our nephew from cancer. I never connected her symptoms with the death until recently when I drew up a timeline of family events. Medical support was highly effective. I wonder how much difference it would have made she had received extra emotional support and explanation during the final weeks of our nephew’s life. It is unfortunate that anxiety in people with WS can take this extreme form. Has this aspect of WS been researched?
Hi Janet, thanks for sharing. The honest truth is I’m not quite sure. I know people have looked into some of the less traumatic expressions of anxiety. I recall reading that many WS adults do express behaviours that indicate anxiety, that generally the symptoms do seem to get better/milder as the adults grow older. However there was also a significant element that the carers of these WS adults become more effective at managing people/situations so that the anxiety doesn’t arise – pre-emptive action.
Personally I’m very aware that Linda only got treatment because I pushed for something to happen. Guess it comes down to carers to recognise when behaviours are not “normal” for the WS adult they know better than anyone else. Our case shows some things don’t need to be lived with!
Your point about preparation is a good one though. For Linda, both deaths happened very suddenly. Preparation wasn’t possible but talking it through afterwards did seem to help her process the thoughts to some degree. I’d guess that conversations beforehand would reduce some of the stress, just like for most people. We can maybe find better ways of preparing for “bad news” in a range of circumstances while avoiding a focus on catastrophe and loss… In my experience, Linda, though naturally joyful, doesn’t need much encouragement to see the glass as half empty. Getting her to focus on the good stuff might be difficult at first but pays dividends!