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New research paints a picture of a journey from a place of confusion, distress and trauma to one of understanding, acceptance and hope

This study, led by University of Plymouth student Lucy de Garis as part of her Masters in Psychology, sought to capture the experiences of parents of young people with BDD. Its aim was to share the voice of parents, learn about the impact of BDD on their lives and offer advice for other parents in a similar position.

One to one interviews were carried out with 9 mothers and 3 fathers, with an additional mother completing a written version.

Main themes identified:

Theme 1. Finding yourself in a confusing, disruptive and distressing place:

Parents spoke of changes in their children’s behaviour in relation to their appearance and with regards attending school.  All parents expressed initial confusion about what was happening – “it was like being thrown into this whole other world, waking up one day and landing on another planet (and) everything that you think you know had gone”.* 

Most parents had either not previously heard of BDD or else did not initially make the link between their child’s behaviour and the condition.  All expressed deep concern – “the hardest thing as a parent you know something is desperately wrong, but you can’t put your finger on what it is”.  The all-consuming and exhausting nature of the condition was evident in parents’ accounts.

Theme 2. Changes to family life, your role as a parent and how you thought things would be:

Things turning out differently than expected was a common thread throughout the interviews.  Parents described the extra planning involved in daily life – “even getting her to school or me getting to work, you know, I have to have like a plan in place with work to say I might not get her into school”. 

This was accompanied by an anxiety about the future which seemed to largely stem from the experience of navigating the pathway alone and not knowing what to expect – “we’ve never been told about going forward and how Rosie’s** future might look and how she’s gonna manage”.

Theme 3. A difficult and lonely path to navigate:

Parents described challenging journeys, particularly up to the point of diagnosis and accessing appropriate support.  They spoke of making multiple phonecalls, of long waiting lists and of feeling they had to fight on behalf of their children to be heard.  There was an overriding feeling that information about BDD and how to support someone with it was not proactively offered, often leaving parents feeling very alone – “Overall it has been a rather isolating experience for me”. 

This was made worse by the fact that it’s a difficult condition for people who haven’t experienced it to understand – “lots of people don’t see the half of it”; “I don’t think they could ever really understand how off the scale difficult it is” and this can make obtaining support from family and friends more challenging, thereby increasing feelings of isolation.

Theme 4. A disabling condition with far-reaching impacts:

A description of the ripple effect of BDD was painted by parents – “it’s really rocked completely through every part of our lives”.  Reflections were made about the impact of BDD on certain life decisions – whether to move house, change jobs, retire, keep working, and whether to invite visitors to the house. 

Every parent noted that their child’s BDD had impacted in some way on their ability to work or on their decisions regarding work.  Most were working flexible or reduced hours, either self-employed or for organisations that were broadly supportive and saw this as the only way to both be employed and care for their child.

Theme 5. The things we’ve learned:

A message echoed by parents who were two or more years into their journey was that there is hope for being able to live with and manage the condition long-term and that with the right support and increased understanding, things can and do get better.  Parents described how as their children’s insight increased, so did their ability to manage their emotions – “(previously) a bad day meant a terrible life and meant there was just nothing and no point whereas she’s beginning to really understand and she will say to me ‘I need to just be left alone today’”. 

Those living with the condition for six years or more portrayed an image of relative stability, of acceptance that the condition would likely be something their child would live with long-term, and of hope for the future and continued recovery.

Throughout the course of the interviews a sub-theme of enabling and supportive factors became evident.  In terms of practical things this included flexible working, supportive schools, having a supportive partner/family/friends, the BDD Foundation, taking part in family therapy (not necessarily BDD specific) and having pets (both as a source of comfort and as motivation for example to leave the house).  In addition, there was widespread recognition of the need to look after your own mental health.

There was consensus of the benefits of accepting the situation and the fact you can’t fix everything for them – “you can be there and you can say the odd thing but you got to understand you can’t change it, it has to go, you have to go through the process or you’ve just got to be there really”.

Advice for other parents:

• Externalise the BDD
• Speak to people/seek help as soon as you think there might be a problem
• Take each day as it comes – one day at a time
• Do all the research you can – knowledge is power
• Forgive yourself for your parenting mistakes
• Build a protective barrier for yourself
• Have a phrase/response to help protect yourself when people ask questions, make comments, offer opinions
• Recognise when you need time out or support and make time for this
• Look after your own resilience
• Make sure you get enough sleep/rest
• Accept that it’s not as a result of something you’ve done – it’s about them and how you can support them (which comes from a greater understanding of BDD)
• It’s a (long) journey
• Talk with someone – a partner or a friend
• Keep a diary/make notes (so you can reflect on progress)
• Recognise and celebrate what they’re good at; enjoy their skills and attributes
• Keep doing enjoyable activities together – things that bring happiness and maintain connection
• Let go of your expectations – things aren’t necessarily linear
• Step back and really listen/try to understand them; give them space to work things out; find the best way to talk/connect with them
• Be upfront and open about BDD (as long as your young person is comfortable with this)
• Keep a sense of hope

Theme 6. How things could be better:

A key issue was the need for greater awareness of BDD, especially among health professionals and schools.  Parents voiced a wish for a reliable, local, timely and joined-up service that understands BDD.  They appealed for BDD to be explained to parents from the outset, rather than feeling compelled to do their own research in the absence of accurate diagnosis and as a result of lengthy waits for assessment and treatment.  Parents also wished that support was proactively offered to them in their caring role.

In summary:

Limitations of this study include the fact that all participants identified as belonging to the White English/Welsh/Scottish/Northern Irish/British ethnic group and all had a minimum of A Levels or equivalent qualifications, therefore not reflecting a full range of diversity.  Additionally, of the 11 children whose parents were interviewed, only two were male; as the ratio of women to men with BDD in the community is 1.27 we might have expected between four and five males.[1]

However, the study does offer a fresh and in-depth insight into the experience of living with BDD and collates advice and recommendations from people with first-hand experience of supporting someone day to day with the condition.  It offers the basis for building on existing resources for parents and carers of people with BDD, with the aim of making the journey less lonely and difficult.

The overarching narrative portrays a journey along a difficult and lonely path, with the effects of BDD having far-reaching impacts.  The journey starts in a place where confusion and distress are rife.  But providing the path leads to appropriate support for the young person with BDD, and providing certain protective and enabling factors are available, the message conveyed is one of hope, with the onward journey accompanied by a sense of understanding and acceptance.

*With grateful thanks to the parents who took part in this study and whose voices are shared via these quotations.

** All names have been changed

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[1] Veale, D., Gledhill, L. J., Christodoulou, P., & Hodsoll, J. (2016). Body dysmorphic disorder in different settings: A systematic review and estimated weighted prevalence. Body Image, 18, 168-186. https://doi.org/10.1016/j.bodyim.2016.07.003

When a loved one has BDD or severe anxiety about their appearance, it doesn’t just affect them – it often impacts the whole family. Many family members find themselves constantly adjusting their behaviour to try to ease the person’s distress – a pattern known as Relational Accommodation.[1].

This might mean helping them avoid mirrors, offering endless reassurance, or even changing day-to-day routines to avoid triggering their anxiety.

But while these adjustments come from a place of love and care, research suggests they can actually make things harder in the long run – both for the person with BDD and for the people supporting them.[2]

What Did This Study Explore?

This study led by Deanna Fallah as part of her Doctorate in Clinical Psychology at the University of Surrey was the first to ask:

• How do family members respond to the challenges that come with this?
• What is it like to live with and care for an adult with BDD or severe appearance-related anxiety?

Who Took Part?

Eight mothers of adult children (aged 18+) with BDD took part in one-on-one interviews. Most were in their 50s, and all spoke honestly and movingly about how their lives had been shaped by their loved one’s struggles.

From their stories, four powerful themes emerged.

Theme 1: Response to BDD occurs in the context of distress

For many of the mothers, their instinct was clear: do whatever it takes to stop their child from suffering. Their responses to BDD were often driven by a deep, almost innate need to minimise distress – not just for their child, but for themselves too.

“as a parent, you’ll just do anything to stop your child being in that state…”

Some mothers described living in a near-constant state of fear that their child might relapse, or that their distress could lead to crisis or harm. For several participants, past experiences had been deeply traumatic, including moments where their child expressed suicidal thoughts or engaged in self-harm linked to their BDD.

These moments left lasting emotional scars, and they powerfully shaped how mothers responded to BDD symptoms going forward, often increasing their drive to accommodate, soothe, or avoid confrontation, even when they knew it might not help long-term.

“I could not leave him unattended, at all because, erm, I mean, he was a suicide risk.”

Theme 2: Relational Accommodation and self-image continuously shape each other

Caring for someone with BDD doesn’t happen in a vacuum – it affects your sense of who you are. The mothers in this study shared how their responses to BDD, especially the ways they accommodated their child’s distress, shaped how they saw themselves, not just as parents, but as people more broadly.

“It’s changed me as a person… I’m far more empathetic about, er, people’s challenges”

For some, going above and beyond to help became central to their identity. Others struggled with guilt or self-judgment, questioning whether they were doing the right thing. Either way, their role as a caregiver wasn’t just something they did, it became part of how they defined themselves.

At the same time, their existing beliefs and values deeply influenced the way they approached their child’s BDD. For example, some felt a strong moral responsibility to protect their child from emotional pain, while others drew on personal beliefs about what “good parenting” should look like.

“it [RA] makes me feel like I’m a better parent because I’m showing empathy and kindness and understanding to my daughter who’s poorly…”

Theme 3: The gains and losses experienced in relationships

The impact of BDD and RA didn’t stay between parent and child – it often rippled out, affecting the wider family and social circle. Mothers spoke about how the distress, intensity, and emotional demands of supporting someone with BDD put strain on marriages, sibling relationships, and friendships.

Sometimes, this led to a sense of isolation or disconnection from people who didn’t understand.

“they don’t really understand what it’s like to live with someone that’s got it unless they come and live with you for a while.”

 But it also drew some mothers closer to others who shared similar experiences or values, like friends or professionals who truly “got it.”

“I’m very lucky. I have really supportive friends who are really good and they live nearby… I think that’s the thing that kind of gets me through a lot of the time.”

For many participants, navigating this tension became part of the emotional work of caregiving – balancing their child’s needs with the expectations, judgments, or misunderstandings of others.

Theme 4: How time impacts understanding and experience of relational accommodation and BDD

Mothers described how their understanding of BDD – and their own responses to it – changed over time.

This evolving awareness sometimes brought empowerment, allowing mothers to set healthier boundaries, speak more openly, or seek outside support. For others, it brought new forms of grief or self-doubt, as they looked back on earlier choices with the benefit of hindsight.

“with hindsight, erm, and knowing a lot more about BDD, erm, I would say none of it was helpful.”

While this study provides valuable insight, it is important to acknowledge some limitations. The sample consisted solely of mothers, predominantly from White British backgrounds, which may not reflect the full diversity of families affected by BDD. Future research should aim to include diverse genders, ethnicities, and types of relationships beyond the parent-child dynamic to better understand how RA is experienced by a wider range of caregivers.

Despite its limitations, these preliminary findings highlight the significant impact BDD has on mothers, highlighting the urgent need for more tailored support for parents.

What needs to change?

• Support should include practical advice for managing BDD symptoms without enabling harmful behaviours, such as training on setting boundaries, managing distress, and fostering positive coping mechanisms.
• A focus on self-care and mental health resilience is crucial to empower caregivers to manage their own needs.
• Carer support groups are vital; they can help reduce isolation, promote shared learning and help caregivers navigate the emotional toll of caregiving.[3]
• Compassion, sensitivity and non-judgement from professionals or trusted others offered meaningful relief and helped these mothers feel seen, validated, and less alone, highlighting the need for parent-focused interventions integrating approaches such as compassion-focused therapy (CFT), with the aim of reducing self-blame and guilt[4].

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References

1- Lebowitz, E. R., Panza, K. E., & Bloch, M. H. (2016). Family accommodation in obsessive compulsive and anxiety disorders: A five-year update. Expert Review of Neurotherapeutics, 16(1), 45–53.

2 – NICE (National Institute for Health and Care Excellence). (2005). Obsessive-compulsive disorder and Body Dysmorphic disorder: Treatment. Retrieved February 2023 from: https://www.nice.org.uk/guidance/CG31/chapter/1-Guidance#steps-35-treatment options-for-people-with-ocd-or-bdd

3 – Gillard, S. (2019). Peer support in mental health services: where is the research taking us, and do we want to go there?. Journal of Mental Health, 28(4), 341-344.

4 – Shenaar-Golan, V., Wald, N., & Yatzkar, U. (2021). Parenting a child with mental health problems: the role of self-compassion. Mindfulness, 12, 2810-2819.