It’s not very often I’m asked to talk about having Type 1 Diabetes – I’m usually in some nursing or informatics forum or talking about social media – but a few weeks ago I was delighted to be able to go to talk to a group of MSc nursing students in Nottingham. I had a great time. I came away with a real feeling of optimism for the profession. I hope they enjoyed it – some of them are likely to read this and I have no doubt they will tell me…..
While I was telling my story something strange happened, something cathartic and afterwards I realised I had never said some of the things I said to this group out loud, in fact when I said them I could almost feel the group do a sharp intake of breath, a moving back, a sitting up straighter; I don’t know, something shifted, moved as if they started to really listen.
So what was this revelation that I made? Difficult as it is for me I have decided to write it down.
In 1989 we moved house. It was the first time I had ever moved and I found the whole experience exhausting. We started early and finished late, running around, packing, unpacking and dealing with problems. I remember that I probably didn’t stop for food but my husband’s Mum made us some tea (that’s dinner in the North – just in case I am confusing you), I suspect I didn’t eat so much of it, as I was so tired – too tired to eat. I remember we hadn’t had chance to assemble the actual bed so we fell exhausted onto our mattress on the floor of our new bedroom. I woke up some hours later with paramedics in the room and no idea why they were there or indeed where I was.
It transpired that I had had a hypoglycaemic attack (a very low blood glucose) and I hadn’t woken up, caused I suspect, by my acute tiredness and lack of eating. I had fitted, a full blown seizure, and it was the scariest thing you can imagine. My poor poor husband had called an ambulance – I had been in a full-blown non-epileptic seizure, with loss of consciousness and convulsions and he was also very scared – it wasn’t one of the things I had warned him about!
I can’t describe how this feels even now. I am someone who likes to be in control and to think that I was in a state whereby I didn’t know what had happened still makes me feel frightened. When people talk about avoiding hypoglycaemia at all costs, even when it means poorer control and all of the things that go with that, I completely understand.
This is hard to say out loud. I have no idea why. I fit at night if my blood glucose is low and if I am so exhausted that I don’t wake up. Why do I find that so hard to say? I think I know why and it’s the reason why I am writing this down.
Even though this is still hard to say – ‘I fitted’ – it wasn’t actually this that created the tension in the room with the students – so what on earth was it? When I fitted I was incontinent of urine and I wet the bed. I used exactly those words – ‘I wet the bed’. The room felt different and they were listening to me in a different way.
There are some things that still feel taboo, that carry a stigma and I think that having ‘fits’ is one of them and that I have internalised this based on my experiences and society around me during my lifetime. Internalized stigma is felt within the person with the condition and reflects their feelings, thoughts, beliefs and fears about being different (Muhlbauer, 2002). The fact that the students seemed unfazed by this confession was counter-balanced by what happened when I said that I had ‘wet the bed’. It wasn’t just me that noticed – there was someone with me on that day who commented afterwards, independently, ‘Did you notice what happened in the room when you said you had been incontinent of urine?’ I don’t know what made me say it – I had never said it out loud to anyone before – not even to my other half. So here we seem to have another social taboo, one that I had internalised.
Urinary incontinence is a really common condition affecting more women than men. If you simply google ‘stigma urinary incontinence’ you will find a plethora of articles about it. So, it seems that some topics are still hard to discuss. Writing this down is hard and it feels difficult to say; I feel that I might be judged as different and that this might mean people treat me differently.
I have not experienced a seizure, or indeed urinary incontinence, for years now, mainly through improved control, because of my beloved insulin pump, and through more care and diligence around testing. But the fact is that it has taken me almost 15 years to say the words out loud make me feel sad. Many people live with conditions such as incontinence and as a result of the stigma attached to this do not report it to healthcare professionals who may be able to help. My hope in writing this down is that it helps to create conversations about some of these taboo topics that impact on so many people lives.
To find out more about urinary incontinence here is the link to the NHS Choices webpage.
Muhlbauer S. 2002. Experience of stigma by families with mentally ill members. Journal of the American Psychiatric Nurses Association 8:76-83.