The hardest thing to say out-loud

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 mDiabetes sugare…..

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.

Moving homeIn 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!

Home - I didn't let it happen the second time we moved to this house.

Home – I didn’t let it happen the second time we moved to this house.

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.
tabooI 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.

22 thoughts on “The hardest thing to say out-loud

  1. I was recently a patient in a psychiatric hospital. Part of my illness involves vivid flashbacks and horrific reliving of experiences in nightmares. Sometimes I wet the bed. I’d never ever tell anyone and hadn’t, until it happened during my hospital stay. I had no choice but to tell someone because I was reliant on them for clean sheets. Suddenly I felt so vulnerable that I wanted to disappear but the nurses didn’t bat an eyelid. They were reassuring, practical and kind. I was and am mortified that this happened, it is a taboo that will never go. I just wish people were brave enough to talk about it, including me.

    Even writing this makes me anxious in case someone realises who I actually am.

  2. Vulnerability is a great way to get under the skin of how I felt/feel too. Your post is brave, even though you still feel anxious. You said it out loud to me and made me feel better 🙂 Thank you x

  3. This blog is so true as a senior nurse myself who suffered episodes of urine incontinence following a liver resection and hysterectomy, I felt and feel the taboo. I couldn’t have any treatment in my own hospital where I worked and near home because of the sheer embarrassment. In my early 30’s I went to a urologist in a hospital a good few miles away, I re-trained my bladder and needed vaginal dilation therapy due to strictures all of which mortified me. It felt like a dirty secret, although I could support and mentor my students better on these issues without telling them how I learnt it all!. If I had mentioned it to people I think they would look at me differently and think I was inadequate. You are doing a magnificent job with your informatics/social media. These blogs will make people talk. I have never spoke about this only to a few extremely close relatives. Thank you.

  4. Thank you for telling me and sharing. I wrote it because I wanted to open some of the more challenging conversations. Like you I feel these things make me a better nurse. I am so very grateful for your comment and your saying it out loud 🙂 x

  5. Nothing more powerful in healthcare than experiencing ill health oneself! Bless you for sharing this. A real story from a real healthcare professional. What a star.

  6. I’m an exnurse, ex midwife, have taken blood etc but am severely needle phobic. Avoid flu jabs, choose holiday destinations on the basis of do we need injections, hate having blood tests and am on the verge of moving onto insulin. I know its completely irrational and I’m sure I will feel better in myself but can’t contemplate the idea of injecting myself every day. Stupid eh? That’s just one of the ‘medical’ secrets I have.

  7. I was in the room. I felt the change. Until that point I guess we were all thinking powerful woman, powerful nurse kicking the butt of diabetes and then the ultimate vulnerability was revealed. Wetting the bed. Brene Brown’s TED talk highlights that vulnerabilities kept in darkness, notntalked about become shame. What you did by revealing your vulnerability..your last taboo….to me and my students is made it a strength. It not only is now your own personal strength but now the strength of 20 + student nurses who now think about the patient experience of diabetes differently. I was at a leadership think tank event last week and we were asked “what does a compassionate leader look like”. I think that vulnerability is at the heart of compassion. Only if one has experienced vulnerability, weakness can one truly feel compassion. I think everyone in the room will be a better, more compassionate nurse because you shared that moment with us, the first time you said it out loud……vulnerability….our strength. Stacy Johnson, Lecturer, University of Nottingham

  8. I wonder if sharing this kind of thing is as big a thing to those listening as it is to those sharing? Or just a different big thing? I believe sharing something like this in the situation you describe shifts power, creates respect and tunes me as a listener into that person as an individual. I get the sense they are going to be straight with me and i want to be alongside them. You’ve set me reflecting on my responses as a nurse to this kind of event, where often we didn’t bat an eyelid, offered reassurance and cracked on with the practicalities as ben describes. What a difference in response depending on context, but i bet the sharing was just as big. Your blog has reminded me what an ordeal it is for anyone to share very personal details and experiences, and how we make people feel following any sharing. Thank you.

  9. Aw! By being so open and honest you’ve really made an impact Coops!
    I would like to echo what Stacey Johnson posted, without our vulnerability we can’t be compassionate – it’s what stands the outstanding nurse out from the average!
    As humans we are frightened to show any flaws – we all have them and those who are open about them find the openness an transformative experience.
    Well done you! And thank you for sharing…

  10. I’ve (fortunately) never had a fit due to a hypo or anything else. Your blog has just made me realise that I’ve never discussed the possibility of fits with my husband! He knows about hypos, the aggression, potential violence, hypo hangovers, hypo cures and glucagon injections but not fits. I know know what tonights tea/dinner conversation is going to be!
    My daughter has various problems with her bladder. She was asked to a sleepover at a friends house. I explained about her still being in a nappy at night. The invitation was withdrawn within the hour! I was really upset about it at the time, so was she. I had to make up an excuse as to why she couldn’t go. I couldn’t tell her the truth.

  11. Ann,
    Thanks for your blog. It has had me re-evaluate the impact continence can have for people and the power that can be obtained through confronting ones demons.

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  14. Thanks for your blog. I’m a student nurse and I have suffered nocturnal enuresis since childhood- wetting the bed became less frequent but never stopped entirely (now once or twice a month in my late 20s.) No one knows except my husband- I started doing my own laundry to hide it from my mum at around age 9. It’s a huge source of shame for me, but it shouldn’t be that way. Hoping to get the courage to speak to my GP about it one day.

  15. Thank you for your comment and for writing it down. Its so hard but I would love to hear that you had built up the courage to go and ask for some help. My incontienence was only when I fitted but I can still feel how it makes me feel even though I have spoken out. You have my empathy xxx

  16. Annie- thank you for your post – I was diagnosed with Type 1 diabetes in 1978 – I was 25 and living in Chicago, Ill., USA. I appreciate your honesty – and understand the seizure is so easy to keep going in a move, raking the leaves or anything that happens as such – your words will help us all learn. I am working a health IT assn. managing public relations – and still in Chicago. Will follow your posts too.

  17. Thank you for posting; my son was diagnosed with Type 1 when he was 8; he is 21 now. Your post reminds me that we have some conversations to have……….

  18. Well some of that happened to a year ago. I have an underactive thyroid and although I had been taking thyroxine for two years, I knew I wasn’t on the right dose. My GP told me the TSH, T4 figures showed I was on the right dose. Eventually, when I saw the diabetic consultant (sadly, something that won’t be available to me soon with the CCG’s plan to move diabetes care to GPs) he agreed that some people needed higher thyroxine doses. A few days later I was feeling full of energy and hence I a thing that I hadn’t been able to do for two years – went for a long walk at a brisk pace. That night I had a severe hypo. My wife has been looking after my night time hypos for 25 years – she is the expert – but this one was not like any she had experience before. She thought I may have had a stroke. So she called 999 and later I woke to find paramedics in my bedroom. I didn’t have a fit, but the hypo was so severe that my wife could not get me to eat. (The tip that the 999 operator gave her was to smear jam on my lips, that was enough to get me to lick my lips and start taking in food.)

    A couple of observations. My wife knows my hypos, but does not know about stroke, perhaps there should be education for partners/carers so they can recognise what is happening? Also, I have just come round from a severe hypo, my brain is addled and I am then asked a series of questions about my medication and treatment. When I come round from a hypo, I actually want to go back to sleep (all that adrenaline makes you very tired). I know paramedics have to fill in their forms, but I am not sure if I am actually able to answer their questions!

  19. Hi Richard
    Thank you so much for your comment. I know and recognise many of them, especially how you feel afterwards. I was at a Diabetes conference this week and there was a research paper there that talked about how people with diabetes effectively just get on with life after hypos but in fact their brain is affected for around 4 hours afterwards (If I’ve remembered rightly)
    I agree with you re partners and family too. I had never really explained anything to Rob – my error and related to my determination to be independent I think. The result of that in many ways was a painful lesson as I describe.
    Thank you so much for sharing your experiences. The reason I write these types of blogs is to share, and throw light on things for people. You have helped me to do that
    Anne x

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