I’ve known Stu for since 2009. We became good friends in early 2017. As we got to know each other better he told me that earlier in his life he had had a breakdown due to Body Dysmorphic Disorder. My initial thought was why would you, a good looking guy, feel that way about the way you look? Over the past couple of years Stu’s taught me so much I didn’t know about the condition and I feel very privileged that he’s sharing his story with us.
You’ve had personal experience with Body Dysmorphic Disorder (BDD) & you’re trying to raise awareness of the condition. Can you tell us more about BDD.
BDD is not about being vain. Some people think it’s about worrying about yourself too much, being self obsessed. It isn’t. BDD is about self hate. It manifests in a hatred of how you look. For example your face, nose or part of your body are typical ones. A BDD sufferer can become obsessed with these perceived flaws, mirror checking up to 60 times a day. They can worry about being seen in public. They can obsess about it to an extreme level.
Are peoples’ symptoms unique to them? Are there typical symptoms of BDD?
There are tell-tale signs and there’s a questionnaire on the BDD Foundation website. Body Dysmorphic Disorder (BDD) is characterised by a preoccupation with one or more perceived defects or flaws in appearance, which are unnoticeable to others. Sometimes the flaw is noticeable but is a normal variation (e.g. male pattern baldness) or is not as prominent as the sufferer believes. This obsessional worrying can lead to mirror checking and mirror gazing for hours at a time and also lead to social isolation. Often, the sufferer is so certain they have a problem physically, they end up housebound. It can become a mountain to climb and it is most certainly a psychological problem, rather than a physical issue. The BDD Foundation with the help of medical professionals, hopes to alleviate this silent illness which lays in the annals of shame and hates being discussed. That’s why sufferers must come forward – to help others – to stop the shame and the trap of BDD once and for all.
When I had my first counselling session in the Priory, there were 10 of us in the BDD group. The counsellor said ‘go round the room and tell everyone what’s wrong with them’. No-one could do it. They couldn’t work out what the other person perceived their own flaws to be. It’s a psychological problem with a physical condition.[/fusion_tagline_box]
You described BDD as a mountain to climb. What would that mountain look like to a BDD sufferer?
Reassurance doesn’t work at all. 1000 people could say you look fine, 1 person could say you look awful and you’ll believe them and discount the 1000 people. Sadly many cases of BDD end in suicide. BDD has only been a recognised condition since the late 1990s and there is still a lot of research to be done on it. The BDD foundation was created to raise awareness and to attempt to get funding to research the condition. Sufferers are generally 50/50 split across gender. Often only women who suffer BDD are referenced in the media, rather than men. It’s a ‘human’ problem, rather than gender specific.
BDD makes having relationships very hard. BDD sufferers have incredible empathy and are understanding, caring and loving. A relationship can be easy for them once they’re in it but initially getting together with someone can be incredibly difficult. You have to have a level of confidence and self belief and BDD sufferers have minimum to none of that.
BDD affects 1 in 10 people to some extent or another. They can be mild sufferers that just require CBT or the extreme end of the scale which requires hospitalisation. BDD is becoming more prevalent with the media’s preoccupation with appearance for both, men and women.
Can you share your own story of BDD with us….
It started in the year 2000, I was 24. I’d just bought a flat, I was working at a big city firm earning a good wage. I had a lot of friends, I worked hard and partied hard, drinking and smoking way too much. Everything was reasonably good but there was something missing. I slowly started to worry about what other people thought of how I looked. I’d ask friends if I had a baby face or if I looked odd? They’d repeatedly reassure me that I looked fine. Our work had a staff directory on the intranet and we all had our photo next to our details. People were laughing at each others’ photos and I was taking it all very personally.
I couldn’t leave the house. I remember cutting myself. I said to my Mum ‘ I’m in trouble, can you help me?’[/fusion_tagline_box]
Over the next 2 months it hit like a brick. I couldn’t leave the house. remember cutting myself. I said to my Mum ‘I’m in trouble, can you help me?’ She told me to go to the GP. I told the GP how I felt. He said I was suffering from depression and prescribed anti depressants and said to come back in a week. I started taking the tablets and 3 days later I went to the shed with a razor blade and started trying to cut my face off and cut my arms. My parents called the GP who contacted the local Mental Health team. The MH team saw me immediately and prescribed anti-psychotics and anti-depressants. I was diagnosed with depression and anxiety. I wasn’t diagnosed with BDD as it wasn’t really known about in those days.
I gained a lot of weight, going from 14 stone to 22 stone (due to the antipsychotics). Mentally, I started feeling better and reduced my medication whilst attending CBT sessions at the Priory. The therapist there said I had BDD, that I was worrying about how I looked and told me there was nothing wrong with my appearance. She spent the next 4 months telling me there was nothing wrong with me. Obviously that didn’t work. I told my psychiatrist I felt better but had BDD still. The psychiatrist said to stop my medication and I’d feel even better. We did this (slowly) and he closed my case.
I returned to work and started working out with a Personal Trainer. I lost the weight and was in good shape. I quit my job as I wasn’t happy with the new management structure and took a few months off. I felt better.
Over the next few months the paranoia started kicking in again. I noticed people looking at me in a strange way at times, in the street etc. I got another job. I was still in good shape, running every week but suffering chronic paranoia. I couldn’t leave the office, I was worried that people were laughing at me and joking about me. I stayed hidden away in the office and when not at work, was housebound for a year.
I went back to the GP and explained I couldn’t function anymore and he signed me off work. When I gave my sick note to my boss he said he felt I was being bullied. I told him it wasn’t just that, it was more than that. By this stage, I was hearing voices almost. I left work anyway. During this time I had a few meetings with the management. They said if people were calling me ‘baby face’ that it was just banter. I explained how hurtful this was and to me, it’s not just a word, it’s a psychological trigger for my BDD.
One night I was in my flat and I was going to kill myself. I had a razor and was all ready and thought ‘if there’s a reason for me to not do it, I thought I wouldn’t, but if there wasn’t, then I’d do it’. I was just ready to start when a text came through from a friend:
‘I hope you’re ok. Just to let you know, I’m thinking of you.’
I threw the razor away and I prayed that night. Properly. I asked God for his help and the next day I was referred to Professor Veale and felt a lot better from that point onwards. I realised there’s a lot more to faith than I’d previously considered. There’s a lot more to getting help than meets the eye.
Professor Veale, & I talked for an hour. He asked me ‘when they say these things to you, do their lips match the sound?’ I said I didn’t know; whenever they said these things, they were facing the other way. He asked ‘don’t you find that interesting?’ He asked why I came off the tablets? I said I was told to. He said the only thing making me feel better was the tablets and by coming off them for quite a long period at this point, it had made me a lot worse.
I became an inpatient at the Priory for a month. I was dosed up on medication, did the therapy. I accepted that not looking my age wasn’t a bad thing, it could be perceived as a good thing. I came out of the Priory with a book by the Gideons; the Bible. It really struck a chord with me. I thought ‘here’s this God, who is super powerful, who genuinely wants to help and no-one else can. I wonder if he’ll heal me?’ I started reading more about it. I went to communion in the Priory. I was the only one there. The Minister in the Priory asked me: why did you come along today? I replied ‘I need more discipline’. He laughed and said ‘we all do’. I took the communion and felt a lot better straight away.
They can’t explain why I’m recovering at the rate I am recovering. I think it’s because of them and my friends and family and because of God. I consider myself to be recovered.[/fusion_tagline_box]
When I left the Priory (In 2006) I told my sister I wanted to find a church. Having friends who attended, she recommended Kingston URC. The Minister was described as ‘bonkers’ ‘crazy’, ‘kind’ and ‘liberal’. I went there a few times, Lesley (the Minister) was cool and the rest is history.
Professor Veale & Dr. Rob Willson helped me a lot along the way. They can’t explain why I’m recovering at the rate I am recovering. I think it’s because of them and my friends and family and because of God. I consider myself to be recovered.
BDD sounds very isolating where there is almost a dialogue in your head.
It’s a record going on in my head that leads back to school. The banter of my colleagues tapped into bullying I had been subjected to at school.
Professor Veale thinks that something, or a series of events, when I was 24, triggered the illness, linking back to having been bullied at school for my looks. Therefore it’s important to understand the triggers so I can stop them and not go back there.
It’s important to understand the triggers so I can stop them and not go back there.[/fusion_tagline_box]
Do you know what the triggers were?
- My Dad being intensely ill, me having to take him to hospital and seeing him be resuscitated.
- My parents moving house. Even though I had my own flat and only stayed with my parents occasionally, moving from my childhood home to another area was emotionally stressful. I hated the new house.
- I’d finished with my girlfriend a year before.
- There was a change of manager at work.
There were loads of little things that added up. I don’t know what the final tipping point was though.
What has your recovery looked like to you?
Leaving the Priory was a turning point for me. I was no longer housebound. I started to work. I worked as a senior technical analyst. I spent a short while unemployed then my church asked me to work as the Operations Manager – for a couple of weeks and I ended up staying there for 9 years in various guises and now back there working part time along with my work as Data Analyst at the NHS and web designer/PC support.
My friends, family and church have been instrumental in helping me to understand myself and what I need to help me to get better.
Recovery is an understanding and awareness of myself. I understand myself a lot better and a value of other people. Patience. Understanding. Love is what recovery looks like to me.[/fusion_tagline_box]
Can we touch on how you feel about your physical appearance now?
I don’t mind how I look now. If I look young, good for me!
Let’s talk about the BDD Foundation.
In 2006 I was in the Priory, I met a lady called Ruth Ryan who I helped with the set up of the BDD Foundation. In 2008 she stepped down from it. I continued to run it for a few years with a guy, Matt Chappel, from Australia. I helped people by sending out a BBC programme called ‘Too Ugly for Love’. I had been asked to participate in the programme, but having discussed it with my parents, they felt I was not far enough along in my recovery and it would be too much exposure.
People contacted us saying they thought they had BDD or had a child suffering from BDD and could we help? I set up an email support service as well as sending them the BBC video. We would get emails from parents saying their child was dying from the condition, please could we help. One of the people working for the foundation now is one of the parents who had contacted me.
I relaunched the BDD foundation in 2011, at the Priory with a meeting with Professor Veale, Dr. Rob Wilson and a load of associates. After a while, I found running it to be too much. Professor Veale took over, Dr. Rob Willson became the chair. I took a step back but kept the website going. Now it’s run by Dr. Rob Willson with Katharine Phillips as a Patron and a group of 8 trustees. It’s going from strength to strength. My goal is to get a leaflet in every surgery and for BDD to be as well known as anorexia and OCD and when people have BDD that they don’t go through the living hell I went through. Rob says should I have been diagnosed with BDD at the start, the last 18 years wouldn’t have happened. In my case it was being continually misdiagnosed and mistreated for 5 years that made it so severe. The BDD foundation is there to help raise awareness and to give raise funds for research so that professionals, doctors and clinicians can do their thing.
If someone was to contact the BDD foundation, what can they expect?
They would have email support, help with research, help from professionals, leaflets to read and so forth. We have the backing of the leading experts in BDD. They can expect a lot of support.
Stu’s Mother, Shirley, wrote about her experience of supporting Stu with his illness for the Kingston United Reformed Church News. She has kindly given us permission to publish it here.
A Family Affair
How do you tell your family and friends that your son has had a complete breakdown? This, I’m afraid, was just the beginning of what was to be a very difficult and sad journey which continues to this day. Although people aren’t afraid to talk about Mental Health issues so much now, back then it was certainly a taboo subject, so to tell people that we found Stuart in a shocking state in our garden shed cutting himself and acting in a peculiar almost deranged manner, was only the beginning for all of us and the start of his breakdown.
Not knowing where to turn as we had only just moved to a new house, but our new GP proved very helpful and by the afternoon we were at the North Cheam Mental Health clinic and Stuart was being assessed.
It took a few years, seeing lots of different doctors and specialists before one day Stuart had a meeting with the Director of his then work (he had been signed off for several months at this stage) who seemed to understand a bit about what Stuart was going through, realising that he couldn’t simply ‘pull himself together’ or think his way out of the state. The man suggested Stuart see Professor Veale, who turned out to be a life saver, realising Stu was suffering more than just depression; diagnosing him with Body Dysmorphic Disorder and Anxiety, which made all the difference. Stuart was to stay as inpatient at The Priory for a month and this was the start of a very slow, but progressive recovery.
While this was going on, our family hit many highs and lows, as you can well imagine and just when Stu was first ill, our daughter Louise went through a divorce. I really wanted to travel to Newcastle to see her but was told not to leave Stu under any circumstances and my husband was working away. It caused a lot of heartache, wanting to be there for both of them. It is precisely this sort of thing that can turn a family upside down.
Amongst all this going on I think the biggest difference was when Stu started to go to Kingston URC. His first visit was with his sister and this was the start of Stu not only becoming a Christian, but making so many wonderful friends which helped him so very much and still do.
Yes, there have been many heartaches along the way but as a family, we have been blessed when you hear some heart-breaking stories.
This all began in 2002 so over the years, our family have had many highs and lows. The fact that many birthdays and Christmases have been tough to get through (owing to Stu not being well enough to enjoy whatever was arranged), caused rows and unpleasantness within the family, but all that aside, I am sure there are many families out there with lots of different heartaches and problems to live with; having our faith, helps us all have the strength to carry on.
Shirley Chandler, January 2018
If you or someone you know has symptoms of Body Dysmorphic Disorder you may find the links below useful:
Also mentioned in the interview: Kingston United Reformed Church
Stu also recommends this book: The Broken Mirror written by Katharine Phillips, Patron of the BDD Foundation.
Stu will be holding a monthly BDD support group at Kingston United Reformed Church (Eden Street, Kingston, KT1 1HZ) on Sunday 24th February from 3 – 4pm. You do not need to register to attend but are welcome to get in touch with Stu or the BDD foundation for any further information.
Check back on this post of follow the BDD foundation’s Social Media channels for future meeting dates.
Stu, as your sister, I am very proud of your strength and your courage. With the BDD Foundation, you have created something supportive and positive out of a really dark time in your life. You are a great role model as ‘Uncle Stu’ and Z&S are very lucky to have you in their lives. I hope you are as proud of yourself as I am of you – Lou xx
What a brave an honest story, thank you for sharing it. It makes me realize how little we know about what is going on in other people’s heads. The more we talk about mental health issues, the better. Great job Holly and Stu x
Thank you for your comments Lou & Lisa. I agree, we never really know someone’s story and it’s so important that we hear them. I’m very proud to be a friend of Stu’s and honoured that he shared his story with me. x