Features

Shame, stigma and sexual dysfunction: the overlooked diabetes complications

Eating disorders, sexual problems and depression are common among people with diabetes, yet often not addressed

Sexual problems, eating disorders and depression are common among people with diabetes, yet often not addressed

  • Some physical and mental health issues common in people with diabetes yet seen as embarrassing are not discussed as possible complications
  • Nurses may feel uncomfortable raising these issues, and patients concerned about being judged, meaning they do not get the support they need
  • Tips on broaching conversations about potentially embarrassing diabetes complications and advice from specialist diabetes nurses and people with the condition
Nurses can help their patients open up about embarrassing complications Picture: iStock

Lesley Mills is comfortable talking about sex.

As a consultant nurse in diabetes at Warrington and Halton Teaching Hospitals NHS Foundation Trust, she

...

Sexual problems, eating disorders and depression are common among people with diabetes, yet often not addressed

  • Some physical and mental health issues common in people with diabetes yet seen as embarrassing are not discussed as possible complications
  • Nurses may feel uncomfortable raising these issues, and patients concerned about being judged, meaning they do not get the support they need
  • Tips on broaching conversations about potentially embarrassing diabetes complications and advice from specialist diabetes nurses and people with the condition
Nurses can help their patients open up about embarrassing complications Picture: iStock

Lesley Mills is comfortable talking about sex.

As a consultant nurse in diabetes at Warrington and Halton Teaching Hospitals NHS Foundation Trust, she runs a monthly clinic for patients experiencing sexual dysfunction – and there are plenty of them, both men and women.

Sexual dysfunction is common in people with diabetes

Erectile dysfunction, for example, will affect three quarters of men with diabetes at some point, according to the website diabetes.co.uk

And studies suggest female sexual dysfunction may be equally common, with high blood sugar causing conditions such as vaginal dryness.

But talking about these things is not always easy. Both patient and nurse may be embarrassed even to mention them. ‘If the healthcare professional is uncomfortable, or doesn’t know what advice to give, they won’t ask the question,’ says Ms Mills, who is also a Queen’s Nurse.

Sexual dysfunction can put a strain on relationships

Lesley Mills: ‘Erection problems can
be worse for men with diabetes’

As a result, the problem can begin to intrude into other aspects of the person’s life. Difficulty getting and maintaining an erection, for example, can lead to stress in a relationship.

And although erection problems are more likely in all men as they age, in those with diabetes other factors come into play, potentially making things worse, Ms Mills explains.

‘One reason is vascular – blood vessel damage. If the blood vessels are narrowed because of high glucose levels or high lipid cholesterol levels, blood supply to the penis is reduced.

‘There are also neuropathic reasons – nerve damage. Because the nerves that go to the penis are tiny, if the blood vessels get blocked, the blood supply to those nerve endings is damaged and the smallest ones are the first to die off.’

Then there are the psychological factors that can affect sexual function, says Ms Mills. Again, these are not unique to men with diabetes but, in combination with vascular and neuropathic damage, can lead to deep-seated problems.

Pharmaceutical, surgical or mechanical solutions such as vacuum pumps are among treatment options, says Ms Mills, and referral to a psychosexual counsellor may be necessary.

Sexual dysfunction can cause psychological problems

Her advice to nurses who feel embarrassed talking about such matters is to at least direct the patient to a source of support, even if that means simply handing out a leaflet or suggesting a resource such as the Diabetes UK website.

Sexual dysfunction can lead to negative thoughts about diabetes and problems with
emotional adjustment Picture: iStock

Rahab Hashim, a diabetes nurse specialist (DSN) at University Hospitals Bristol and Weston NHS Foundation Trust, studied sexual dysfunction in women with type 1 diabetes as part of a master’s degree.

She says there are psychological, biological and sociodemographic factors that affect female sexual desire. ‘Many studies found that the prevalence of depression and low mood is higher in women with diabetes who have sexual dysfunction.

Rahab Hashim: ‘Prevalence of depression
is higher in women with diabetes who
have sexual dysfunction’

‘There is also variation in terms of the acceptance of diabetes among people who have it. Women with sexual dysfunction had negative thoughts about their diabetes and problems with emotional adjustment.’

Add in factors such as body mass index and issues surrounding the quality of intimate relationships – all of which can impinge on sexual function in women with diabetes – and it becomes clear that some complications of the condition may not only be embarrassing to discuss but complex too.

 

Healthcare professionals should be able to start discussions about sexual dysfunction

But complexity is no reason to ignore them. Having interviewed a number of women about sexual dysfunction, Ms Hashim found most preferred healthcare professionals to ask rather than having to raise such matters themselves.

The women felt there was a lack of awareness of the existence of sexual dysfunction in female patients,’ she says.

All those with long-term conditions can face emotional and psychological challenges but those challenges can be especially acute in diabetes because of the way it affects so many aspects of a person’s social, sexual, work and personal life.

‘People with diabetes are at far more risk of psychological distress that then develops into mental health problems,’ says DSN Amanda Epps.

‘This is something that healthcare professionals need to be particularly mindful of and building a trusting relationship in diabetes is paramount.’

Amanda Epps: ‘Building a trusting
relationship with patients is paramount’

Eating disorders – common in people with type 1 diabetes – can have serious repercussions

Eating disorders are especially common in type 1 diabetes, she says, and are another factor related to the condition that are less often acknowledged or discussed than, say, retinopathy or foot problems.

‘Sometimes a person will withhold their insulin in order to lose weight,’ says Ms Epps, who works for Rainham Primary Care Network and Medway NHS Foundation Trust.

‘This can become life-threatening, leading to regular hospital admissions for diabetic ketoacidosis and significant additional health problems, and can, ultimately, result in death.’

Opening up – tips on broaching conversations about embarrassing complications of diabetes

 

Learn about the subject ‘Knowledge, both for healthcare professionals and the person with diabetes, is important to break the silence on complications,’ says diabetes specialist nurse (DSN) Amanda Epps. ‘The more a person knows about the condition they are living with, the more they feel empowered to ask for help when they need to’

Build trust ‘If a person feels they can talk to you without blame or prejudgement they are more likely to open up to you,’ Ms Epps says. ‘And give the person time to discuss what’s important to them.’ If a nurse can help resolve a different problem that’s troubling the patient, diabetes management may become easier for that person.

 

Undertake an individualised assessment For women with sexual dysfunction, pain related to dryness, although it may be hormonal, can also be a complication of diabetes, says DSN Rahab Hashim. ‘Non-specialist nurses need to be aware of that. Also, if a patient starts on antidepressants, it would be good to mention that they are linked to sexual dysfunction.’

 

Know where to signpost patients if you are a non-specialist and feel unable to help. DSN Lesley Mills suggests a head-to-toe review can help a nurse to initiate potentially tricky conversations about erectile dysfunction, for example. ‘Then the nurse might say, “This is not something I deal with but a member of the team does”’

 

Use a checklist Diabetes blogger and activist Renza Scibilia recommends a checklist for patients to fill in before a consultation or review. ‘People might need a bit of a prompt so having a form they fill in beforehand gives them permission to have a conversation about things the healthcare professional may feel nervous about raising’

 

Try not to be embarrassed by sensitive or stigmatised complications ‘Do ask the question, but do it in a person-centred way,’ suggests diabetes activist Chris Aldred. ‘Sometimes it just needs to be the opening of a conversation. But don’t think you’re going to nail it all in one go – it’s a progressive thing. Once the person with diabetes gets their confidence up, it all just comes out.’

Focus on the person, not the condition, says Mr Aldred. ‘And be gentle.’

 

Complications sometimes used to scare or shame people with diabetes

As Ms Epps points out, it is not only issues to do with sex or body weight that those with diabetes may feel awkward talking about.

‘I’ve heard stories from people with diabetes describing how, in the past, some healthcare professionals would use the topic of complications to try and scare a person into managing their diabetes.

‘People may have had diabetes for a long time, with years of healthcare professionals telling them that developing a complication is somehow a failure on their part. And of course that makes them reluctant to talk about it.’

She says blame is particularly misplaced because all sorts of complications in diabetes can occur even when the person does their best to manage their condition. It may be that a genetic vulnerability, for example, has caused the complication.

‘Apportioning blame to someone is not helpful because it won’t make them feel empowered to make a change.’

Many people with diabetes feel judged for complications they experience

Chris Aldred: ‘People with diabetes feel judged a lot’

Chris Aldred, a diabetes advocate known online as the Grumpy Pumper says: ‘If you get complications, it’s “Oh, that’s because you didn’t look after yourself.” And that stops people talking about not just the embarrassing complications but the standard ones too. We feel we’re judged a lot.’

If diabetes is under control, the risk of complications, embarrassing or otherwise, is minimised – in theory, at least. But as Mr Aldred points out, no one wants to be ill. It’s just that sometimes things other than diabetes become more of a priority – particularly at the present time, when the COVID-19 pandemic and its associated concerns about jobs, money and family can feel more important.

‘Living with diabetes is a 24/7 condition,’ says Ms Epps. ‘There are multiple factors that can cause a person to not make diabetes their priority. Stress at work or with family life can have a major impact on someone’s focus on their health.’

Embarrassed, uncomfortable, stigmatised – what people with diabetes say about their complications

Chris Aldred, who has type 1 diabetes, uses an insulin pump and is widely known in the online diabetes community as the Grumpy Pumper, says men with diabetes, as well as women, can be vulnerable to eating disorders.

‘But men really won’t talk about it. I went to speak at a conference on the subject and there were no men there at all. They’re embarrassed, not comfortable. It’s the stigma. And if they’re not comfortable talking about these things with their peers who have the same issues and concerns, they’re not going to talk to healthcare professionals about them.’

Diabetes advocate Renza Scibilia, who blogs at Diabetogenic, says a subject like disordered eating is rarely discussed or mentioned on factsheets about diabetes even though it affects many people. ‘There’s insulin omission, manipulation or restriction, all with a goal to lose weight.

‘Some people get really messed up by being diagnosed with diabetes – they get post-traumatic stress disorder from it’

Renza Scibilia, diabetes advocate

‘But healthcare professionals are afraid to talk about these things because they don’t know what to do if somebody says, ‘Yes, I’m doing that”.’

In her case, when she experienced a health problem separate from her diabetes that caused her to lose weight rapidly, her endocrinologist was quick to ask her about it.

But is she comfortable with such direct questioning about a topic that can carry considerable stigma? ‘I welcome it from somebody who asks in a non-judgemental way and who, when I’ve needed help before, has known where to point me.’

Ms Scibilia: ‘Eating disorders are
rarely mentioned’

Like disordered eating, sexual dysfunction is also ‘very, very common’ among women with diabetes, Ms Scibilia says – but less commonly discussed. ‘When women are asked specifically about it, they say, “I thought it was only me”. They’re genuinely surprised because no one’s been talking to them about it. As a result, everybody’s saying, “I thought it was only me”.’

Mr Aldred says that although people with diabetes are checked regularly for obvious complications such as eye problems or neuropathy, ‘we’re not systematically screened for other things’.

‘And when we’re talking about mental health issues, that’s a problem. For example, some people get really messed up by being diagnosed with diabetes – they get post-traumatic stress disorder from it. Some parents do as well, when their kids are diagnosed.’

 

Helping patients open up about embarrassing complications

Jai Hill, a DSN with Poole Hospital NHS Foundation Trust, suggests that exploring these other concerns a person with diabetes may help build the sort of relationship where they feel able to talk about embarrassing complications.

She describes a patient who came to a diabetes clinic she was running with a practice nurse. Encouraged by the nurses’ interest in him as a person and not just his diabetes, the man began to describe his stressful job, his long working hours, getting home late and his strained relationship with his wife.

Many patients need encouragement to open up Picture: iStock

‘My thoughts were, okay, long hours, he can’t really concentrate on himself, how do we help that situation?’ Ms Hill says.

Over the course of the consultation, she and the practice nurse slowly gained his trust. ‘He was really opening up to us.’

And just as the appointment was drawing to a close, he asked how diabetes might affect erectile function.

‘I’d only just met him and he trusted us enough to ask that question. It was an honour, really,’ says Ms Hill.

It transpired that the man’s testosterone levels were low and after treatment his diabetes improved.

But his case demonstrates that, as Mr Aldred puts it: ‘If you want to find out about sexual dysfunction, don’t come in with a question such as, “Have you experienced any sexual dysfunction?”.’


Daniel Allen is a health writer

 

Want to read more?

Subscribe for unlimited access

Enjoy 1 month's access for £1 and get:

  • Full access to primary healthcare.com
  • Bi-monthly digital edition
  • RCNi Portfolio and interactive CPD quizzes
  • RCNi Learning with 200+ evidence-based modules
  • 10 articles a month from any other RCNi journal

This article is not available as part of an institutional subscription. Why is this?

Jobs