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
[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
