National Phobics Society (NPS) Registered Charity No: 1113403 Company Reg. No: 5551121 Tel: 0870 122 2325 www.phobics-society.org.uk 1975 Golden Rail Award breaking the silence 1989 National Whitbread Community Care Award 2002 BT/THA Helpline Worker of the Year Award The Queen’s Award for Voluntary Service 2006 unsung heros The Queen’s Award for Voluntary Service 2006 what is toilet phobia? Toilet Phobia is rarely just one condition. It is a term used to describe a number of overlapping conditions (see diagram below): social what is toilet phobia? 3 phobia agoraphobia paruresis who can be affected? 4 toilet phobia what causes toilet phobia? 5 panic parcopresis does everyone have the same experience? 5 ocd forms of toilet phobia 6-7 real life experiences 8-12 These conditions have one thing in Due to the nature of this common - everyone affected has problem, people are often difficulties around using the toilet. reluctant to admit to the anxiety & fear: understanding the effects 13-14 These difficulties vary but with the condition or to seek help. right support, the problems can Those who do seek help can usually be alleviated, reduced or usually overcome or improve what types of help are available? 15-19 managed. their ability to cope with the problem, even after many The fears around the toilet include: years of difficulty. Seeking help real life experiences 20 • not being able to is the first step to finding real urinate/defecate improvements. success stories 21 • fear of being too far from a toilet • fear of using public toilets • fear that others may be watching your next step 22 or scrutinising/listening glossary 23 2 3 who can be affected? what causes toilet phobia? Almost anyone - Toilet Phobia is Toilet Phobia and overlapping/ not as rare as you may think. inter-related conditions are often caused by: Exact statistics are not known as more population based research is • Anxiety required. However, the British • Fear Psychological Society (BPS), the representative body for • Specific experience/trauma psychologists and psychology in • Learnt behaviour from the UK report that: someone close Nearly four million people in the UK are unable to urinate in public toilets because of a social phobia commonly does everyone have called 'shy pee', which can affect relationships, dent the same experience confidence and even lead to suicidal feelings of toilet phobia? Everyone is different, but many of the people with Toilet Phobia share Some people are affected common characteristics: significantly, others moderately and a large number of people are • Fear of not being able to affected mildly as shown in this urinate/defecate pyramid: • Fear about the cleanliness of public toilets (this is a form of OCD) • Fear that others may be watching/able to see you whilst using the toilet • Fear that others may hear you whilst using the toilet. No one is exactly the same, so it is important to establish what form of Toilet Phobia affects you, so that you can get the right kind of help. 4 5 forms of toilet phobia Fear of urinating in Fear of defecating in Fear of being unable Fear of using public public places public places to use a toilet in public toilets/contamination places issues This fear which is often This fear is known as 'psychogenic accompanied by difficulties in faecal retention', 'shy bowel This fear is common in women This fear is usually associated with urinating is sometimes called syndrome', bashful bowel (but not exclusively), especially worries and concerns about 'avoidant paruresis', 'psychogenic syndrome' and 'parcopresis'. It is those who have a history of cleanliness and the subsequent urinary retention', or 'shy bladder recognised as a form of social anxiety and/or panic attacks. possibility of catching germs from syndrome'. It is recognised as a phobia. It can affect men, women Sufferers fear having a panic toilet seats etc. It is classified as a form of social anxiety which can and children. Sufferers of this attack whilst outdoors and being form of Obsessive Compulsive develop at any age and can affect problem experience increased unable to reach a toilet during an Disorder (OCD). Whilst public men, women and children. This anxiety when others are nearby. episode of panic/peak anxiety. The toilets are rarely very clean, most type of Toilet Phobia is more This increased anxiety causes an sufferer can gradually withdraw people can use them if need be. prevalent amongst men probably increase in muscular tension which from society, preferring to stay Sufferers of this form of Toilet because of the design of public in turn, decreases the likelihood of indoors, or may keep to places Phobia however go out of their toilets and the openness of urinals. passing a bowel movement. Like where he/she knows there is an way to avoid using public toilets avoidant paruresis, those affected accessible public toilet. even if this means ultimately Sufferers often think/feel that often develop 'safe' places such Alternatively, the sufferer may soiling/wetting themselves. This is someone may see or hear them as their homes, and are only able become obsessed with finding out in contrast to other sufferers who urinating in public or that their to pass a motion in these places. the locations of public toilets and view soiling/wetting themselves a motives for being at a urinal may They therefore feel the need to be develop a form of obsessional shameful act. Sufferers will often be questioned if they can't urinate. close to their 'safe' toilet, which is anxiety. Sufferers may adapt their go to great lengths to avoid In the main there is not usually a usually at home. Sufferers may diet and movements/lifestyle to touching things around toilets, for problem at home. change their diet to try to control prevent the risk of needing to have example, they will only turn off the Public toilet facilities anywhere can bowel movements. to use a public toilet. This can taps or pull the door open with a be a problem at school/college on occur regardless of whether the paper towel or tissue. This trains or ships, at work, in pubs or use of the toilet is to pass a problem can affect men, women restaurants, on holidays, even motion or to urinate. The problem and children and again people friends' homes. Problems usually is entirely associated with the often change their diet to try to disappear at home but visitors in location and immediate control their use of toilets. Most the house can cause problems for accessibility of toilets. sufferers feel more in control at some. The difficulty largely home because they are sure of disappears if sufferers are certain their home's cleanliness. there is no-one else around and they are confident of their surroundings. Sufferers can rarely urinate on demand so giving urine samples for testing is usually not possible. Those affected may change their drink/food habits to try to control when they need to urinate. 6 7 real life experiences Toilet Phobia is quite common, led a very full life. He has to turn sympathetic towards people every day, increasing the dose if but those who suffer from it often down work as he can't travel. His suffering from this condition. she is particularly anxious and feel isolated. Below are some real work always gave him great Murray may well find Cognitive takes it whilst her mother is at life experiences from Toilet Phobia satisfaction but he feels this has Behaviour Therapy (CBT) helpful work just in case there is an sufferers which you may identify been taken away from him. as it would help him to manage emergency and she is called out with. his anxiety and enable him to to her. Another safety technique If Murray has a hospital work out a programme, allowing Emma uses is the clothes she appointment he will stop drinking him to take small steps towards wears. She prefers winter as she hours before it. He says he knows murray - rarely goes out achieving his overall goal (i.e. can wear clothes which hide he is ruining his kidneys but this and has turned down work being able to urinate in a public everything and also wears only does not stop his avoidant toilet). CBT would explicitly help dark-coloured clothing. Emma has Murray has suffered from shy behaviour although it does add to Murray to challenge and change lost contact with most people but bladder syndrome and his anxiety. the unhelpful thoughts and always avoided telling people agoraphobia for 50 years. His behaviours that he experiences, about her problem in case she problem has affected his life Professor Karina Lovell says: thereby gradually overcoming his was considered 'weird'. She is dramatically. He refers to his Murray has had Toilet Phobia for difficulties. happier to let people know she problem as 'life-inhibiting'. His a number of years. Many, but not suffers from anxiety and panic mother used to suffer in a similar all phobias start in childhood and rather than admit to her Toilet way. If anyone was near when she go unabated for years without emma - affected since Phobia. was about to use the toilet she effective treatment. The shame childhood would just flush it and go away. that people feel with Toilet Phobia Professor Karina Lovell says: is acute which is demonstrated Emma has had issues around Murray rarely goes out because of Emma has a severe Toilet Phobia by Murray who has only recently toilets for as long as she can shy bladder syndrome. If he does which manifested itself in been able to tell his sons.