1975 Golden Rail Award

1989 National Whitbread Community Care Award

2002 BT/THA Helpline Worker of the Year Award

The Queen’s Award for Voluntary Service 2006

unsung herosThe Queen’s Award forVoluntary Service 2006

National Phobics Society (NPS)Registered Charity No: 1113403Company Reg. No: 5551121Tel: 0870 122 2325www.phobics-society.org.uk

breaking the silence

2 3

what is toilet phobia? 3

who can be affected? 4

what causes toilet phobia? 5

does everyone have the same experience? 5

forms of toilet phobia 6-7

real life experiences 8-12

anxiety & fear: understanding the effects 13-14

what types of help are available? 15-19

real life experiences 20

success stories 21

your next step 22

glossary 23

Toilet Phobia is rarely just onecondition. It is a term used todescribe a number of overlappingconditions (see diagram below):

These conditions have one thing incommon - everyone affected hasdifficulties around using the toilet.These difficulties vary but with theright support, the problems canusually be alleviated, reduced ormanaged.

The fears around the toilet include:

• not being able tourinate/defecate

• fear of being too far from a toilet

• fear of using public toilets

• fear that others may be watchingor scrutinising/listening

Due to the nature of thisproblem, people are oftenreluctant to admit to thecondition or to seek help. Those who do seek help canusually overcome or improvetheir ability to cope with theproblem, even after many years of difficulty. Seeking helpis the first step to finding realimprovements.

what is toilet phobia?

toilet phobia

agoraphobia paruresis

parcopresispanic

ocd

social phobia

4 5

Almost anyone - Toilet Phobia isnot as rare as you may think.

Exact statistics are not known asmore population based research isrequired. However, the BritishPsychological Society (BPS), therepresentative body forpsychologists and psychology inthe UK report that:

Nearly four million people inthe UK are unable to urinatein public toilets because ofa social phobia commonlycalled 'shy pee', which canaffect relationships, dentconfidence and even lead tosuicidal feelings

Some people are affectedsignificantly, others moderatelyand a large number of people areaffected mildly as shown in thispyramid:

who can be affected? what causes toilet phobia?Toilet Phobia and overlapping/inter-related conditions are oftencaused by:

• Anxiety

• Fear

• Specific experience/trauma

• Learnt behaviour from someone close

Everyone is different, but many ofthe people with Toilet Phobia sharecommon characteristics:

• Fear of not being able tourinate/defecate

• Fear about the cleanliness ofpublic toilets (this is a form ofOCD)

• Fear that others may bewatching/able to see you whilstusing the toilet

• Fear that others may hear youwhilst using the toilet.

No one is exactly the same, soit is important to establish whatform of Toilet Phobia affectsyou, so that you can get theright kind of help.

does everyone have the same experience of toilet phobia?

6 7

forms of toilet phobiaFear of urinating inpublic places

This fear which is oftenaccompanied by difficulties inurinating is sometimes called'avoidant paruresis', 'psychogenicurinary retention', or 'shy bladdersyndrome'. It is recognised as aform of social anxiety which candevelop at any age and can affectmen, women and children. Thistype of Toilet Phobia is moreprevalent amongst men probablybecause of the design of publictoilets and the openness of urinals.

Sufferers often think/feel thatsomeone may see or hear themurinating in public or that theirmotives for being at a urinal maybe questioned if they can't urinate.In the main there is not usually aproblem at home.

Public toilet facilities anywhere canbe a problem at school/college ontrains or ships, at work, in pubs orrestaurants, on holidays, evenfriends' homes. Problems usuallydisappear at home but visitors inthe house can cause problems forsome. The difficulty largelydisappears if sufferers are certainthere is no-one else around andthey are confident of theirsurroundings. Sufferers can rarelyurinate on demand so giving urinesamples for testing is usually notpossible. Those affected maychange their drink/food habits totry to control when they need tourinate.

Fear of defecating inpublic places

This fear is known as 'psychogenicfaecal retention', 'shy bowelsyndrome', bashful bowelsyndrome' and 'parcopresis'. It isrecognised as a form of socialphobia. It can affect men, womenand children. Sufferers of thisproblem experience increasedanxiety when others are nearby.This increased anxiety causes anincrease in muscular tension whichin turn, decreases the likelihood ofpassing a bowel movement. Likeavoidant paruresis, those affectedoften develop 'safe' places suchas their homes, and are only ableto pass a motion in these places.They therefore feel the need to beclose to their 'safe' toilet, which isusually at home. Sufferers maychange their diet to try to controlbowel movements.

Fear of being unable to use a toilet in publicplaces

This fear is common in women(but not exclusively), especiallythose who have a history ofanxiety and/or panic attacks.Sufferers fear having a panicattack whilst outdoors and beingunable to reach a toilet during anepisode of panic/peak anxiety. Thesufferer can gradually withdrawfrom society, preferring to stayindoors, or may keep to placeswhere he/she knows there is anaccessible public toilet.Alternatively, the sufferer maybecome obsessed with finding outthe locations of public toilets anddevelop a form of obsessionalanxiety. Sufferers may adapt theirdiet and movements/lifestyle toprevent the risk of needing to haveto use a public toilet. This canoccur regardless of whether theuse of the toilet is to pass amotion or to urinate. The problemis entirely associated with thelocation and immediateaccessibility of toilets.

Fear of using publictoilets/contaminationissues

This fear is usually associated withworries and concerns aboutcleanliness and the subsequentpossibility of catching germs fromtoilet seats etc. It is classified as aform of Obsessive CompulsiveDisorder (OCD). Whilst publictoilets are rarely very clean, mostpeople can use them if need be.Sufferers of this form of ToiletPhobia however go out of theirway to avoid using public toiletseven if this means ultimatelysoiling/wetting themselves. This isin contrast to other sufferers whoview soiling/wetting themselves ashameful act. Sufferers will oftengo to great lengths to avoidtouching things around toilets, forexample, they will only turn off thetaps or pull the door open with apaper towel or tissue. Thisproblem can affect men, womenand children and again peopleoften change their diet to try tocontrol their use of toilets. Mostsufferers feel more in control athome because they are sure oftheir home's cleanliness.

8 9

Toilet Phobia is quite common, but those who suffer from it oftenfeel isolated. Below are some reallife experiences from Toilet Phobiasufferers which you may identifywith.

murray - rarely goes out and has turned down work

Murray has suffered from shybladder syndrome andagoraphobia for 50 years. Hisproblem has affected his lifedramatically. He refers to hisproblem as 'life-inhibiting'. Hismother used to suffer in a similarway. If anyone was near when shewas about to use the toilet shewould just flush it and go away.

Murray rarely goes out because ofshy bladder syndrome. If he doesgo out, he finds it extremelystressful. He has to make surethat he knows where the toiletsare and that he is away frompeople. He would rather not goout than deal with the stress. Hegets invitations from people butturns them down. He does notwant to reveal his problem as hefeels this would make him appearweak. He considers himself verysociable but now avoids being withpeople. He has only recently toldhis sons about his problem. Hewouldn't visit them and theythought he was being unsociable.

Murray can't do anything and thisfrustrates him as he has always

led a very full life. He has to turndown work as he can't travel. Hiswork always gave him greatsatisfaction but he feels this hasbeen taken away from him.

If Murray has a hospitalappointment he will stop drinkinghours before it. He says he knowshe is ruining his kidneys but thisdoes not stop his avoidantbehaviour although it does add tohis anxiety.

Professor Karina Lovell says:

Murray has had Toilet Phobia fora number of years. Many, but notall phobias start in childhood andgo unabated for years withouteffective treatment. The shamethat people feel with Toilet Phobiais acute which is demonstratedby Murray who has only recentlybeen able to tell his sons. Hisphobia has affected manyaspects of his life includingavoiding going out if at allpossible. The safety behavioursthat Murray uses when he goesout show the extent to whichphobias affect people's lives.Murray, although aware of thedangers, restricts his fluid intakebefore going out to try to ensurehe does not have the urge tourinate when away from home.

What can be done?

Raising awareness of ToiletPhobia will help health careprofessionals to be more

sympathetic towards peoplesuffering from this condition.Murray may well find CognitiveBehaviour Therapy (CBT) helpfulas it would help him to managehis anxiety and enable him towork out a programme, allowinghim to take small steps towardsachieving his overall goal (i.e.being able to urinate in a publictoilet). CBT would explicitly helpMurray to challenge and changethe unhelpful thoughts andbehaviours that he experiences,thereby gradually overcoming hisdifficulties.

emma - affected sincechildhood

Emma has had issues aroundtoilets for as long as she canremember. She was bullied atschool and there was a particularlyunpleasant incident in a toilet afterwhich she developed ToiletPhobia.

Emma's problem is around soilingherself, even though she hasnever done so. She has developedavoidance techniques aroundeating and does not go out. Sheavoids a lot of foods in case itcauses her to have problems withher bowels and says she wouldcompletely avoid eating, howevershe needs to eat because themedication that she is on makesher sick if she has an emptystomach. She takes Imodium

every day, increasing the dose ifshe is particularly anxious andtakes it whilst her mother is atwork just in case there is anemergency and she is called outto her. Another safety techniqueEmma uses is the clothes shewears. She prefers winter as shecan wear clothes which hideeverything and also wears onlydark-coloured clothing. Emma haslost contact with most people butalways avoided telling peopleabout her problem in case shewas considered 'weird'. She ishappier to let people know shesuffers from anxiety and panicrather than admit to her ToiletPhobia.

Professor Karina Lovell says:

Emma has a severe Toilet Phobiawhich manifested itself inchildhood following a traumaticincident. Her phobia has nowextended to all areas of her life,impacting on everything that shedoes to the extent that she isunable to go out. She alsoengages in a range of safetybehaviours such as takingImodium and restricting her diet.Emma's case history clearlybrings out the element of shamethat people feel when they haveany phobia (but particularly ToiletPhobia).

What can be done?

Raising awareness of thisproblem will help other people to

real l ife experiences

10 11

realise that people should notfeel ashamed and that thesephobias are common. Emmawould also benefit frompsychological help and CBT islikely to be helpful. Although thereare many interventions used inCBT, I would suggest exposuretherapy where Emma would beasked to write down all herfeared situations and put themfrom 'highest fear' to 'lowestfear'. Following this we would askEmma to decide which fear shewould be most prepared totackle from the list and thenencourage her (at her own pace)to gradually and repeatedly facethe fear until her anxiety reducedand she was no longer fearful.We would continue to work withthe hierarchy of fears until thefears that impacted on her lifehad decreased.

caroline - couldn't even visit her sons

Caroline is 34 and has sufferedfrom emetophobia (vomit phobia)since she was 8 years old. HerToilet Phobia is more recent. Shewas brought up by hergrandparents and remembers hergrandmother always talking aboutbeing constipated.

Caroline feels she has developedagoraphobia because of her othertwo phobias. She will go out butwith great difficulty. She always

fears picking up a bug which willmake her sick or affect herbowels. Her first marriage endedbecause of her difficulties and hertoilet-related problems becameextreme after her secondmarriage. Caroline finds itdistressing using the toilet whenher husband is around. Shedreads holidays and gets upsetwith her husband for using thetoilet even though they haveseparate toilets. She has evenphoned him at work because shehas been so distressed by thethought that he had used the toiletthere. They do not have people tothe house. There was a brief visitfrom family at Christmas but thiswas very difficult and has not beenrepeated. She manages a trip toher in-laws about once a month.

There are also aspects ofObsessive Compulsive Disorder inCaroline's story and she finds achange in routine very disturbing. Ifher husband is on holiday or shesees or hears her neighbours, shegets very agitated. She also getsupset if she hears her neighboursusing the toilet.

Caroline only eats food that will notmake her sick or affect her bowels- mostly carbohydrates.

Professor Karina Lovell says:

Caroline has a severe phobia.Her main fear appears to becentred around 'picking up a bug'which could either result in her

becoming ill or being sick (whichshe is fearful of), or it affectingher bowels (which she alsofears). Caroline's response to thishas been to avoid more andmore things and this is makingher life very difficult. From thecase study, it would seem thatCaroline's phobia has extendedout (we use the wordgeneralisation) because of thestressful life events that she hasexperienced.

What can be done?

Caroline would benefit from a fullpsychological assessment to gaina better understanding of herdifficulties. It is difficult toascertain from the case studywhether Caroline has OCD,agoraphobia, specific phobia,social phobia or a combination of these problems. As with theother case studies, the bestevidence we have for helpingthese types of difficulties is CBT.In Caroline's case I would want toknow more about her difficultiesand how they fit together before I recommended a specifictreatment plan. However all suchplans would be based on workingin a collaboratively way - doingthings together.

pete - worries about thecleanliness of toilets

Pete suffers from ObsessiveCompulsive Disorder andconstantly worries about dirt,germs and contamination issues.He thinks he has felt this waysince he was six years of age.

Pete lived in Jamaica until he waseleven and thinks his earliestexperience of contaminationissues was connected with acousin who used to pull out hismilk teeth for him. He remembersbecoming very anxious about dirtand germs one time she did thisafter combing a woman's hair.

Toilets are a particular problem forPete. He always makes sure heuses the toilet at home before hegoes out in order to minimise anyneed he might have to use a toiletaway from home. He will never siton the seat of a toilet or allow hischildren to. After he has used thetoilet he will only touch taps anddoor handles if he uses papertowels. If there are no towelsavailable he will use his elbows oreven his feet.

If Pete has to use a public toiletwhilst out this will result in himbeing unable to eat afterwards. Hewon't use a public toilet at all if hefeels it is too dirty.

In food shops and take-aways heoften finds himself thinking aboutwhat the assistants may havebeen doing before serving the

12 13

food, and in particular he worriesabout their standards of hygiene.

Professor Karina Lovell says:

It is clear from Pete's story thathe has Obsessive CompulsiveDisorder (OCD) and experiencesthoughts (e.g. I will becomecontaminated from dirt andgerms from toilets) and exhibitsritualistic behaviour (e.g. avoidsusing public toilets, not sitting onany toilets or allowing his childrento, avoids touching bathroomtaps and doors with his hands).

What can be done?

There is clear evidence in theNICE (National Institute for Health and Clinical Excellence)guidelines that the most effectivetreatment for OCD is CBT. Thetreatment that may help Petewould be exposure therapy andresponse prevention - i.e. gradually and in collaborationwith Pete, exposing him to hisfear of toilets and asking him torefrain from ritualising until hisanxiety reduces. Pete'streatment would also (indirectlyor directly) involve his family,particularly his children so thatthey too are ‘allowed’ to sit on a toilet.

anxiety and fear:understanding the effectsBy Professor Karina Lovell

As described earlier, Toilet Phobiacan occur in many different forms.It is clear from the experiences ofsufferers that Toilet Phobia affectspeople in a range of ways. Thecommon factor experienced by allToilet Phobia sufferers is however,anxiety. To understand how toovercome Toilet Phobia wetherefore first need to understandwhat anxiety is.

Anxiety (or any other emotion forthat matter) can be seen toconsist of three separate but inter-related parts:

• Things we feel physically

• Things we do or stop doing(behaviours)

• Things we think (cognitions)

Things we feel physically:When anxious or panicky weexperience a number of physicalsymptoms including a racing heart,butterflies in the stomach,sweating, shaking (either visibly orfeeling as though we are shaking)and jelly legs.

Things we do:This usually includes avoiding, orescaping from situations in whichwe feel panicky. For examplepeople with Toilet Phobia will oftenavoid using public toilets. The

individual experiences of ToiletPhobia outline many of thebehaviours that people exhibitwhen feeling anxious. For example,Murray avoids invites from hisfriends, Caroline avoids using thetoilet if her husband is at home,Emma avoids eating certain foodsand Pete avoids public toilets.Murray, Caroline and Emma all avoidgoing out as much as possible.

Things we think:When anxious or panicky we oftenhave a lot of unhelpful thoughts.For example Pete's thoughts arefocused on becomingcontaminated, and Emma'sthoughts are focused on herloosing control of her bowels.

All these 3 aspects of anxiety areseparate but inter-related. Forexample, Pete fears that he will becontaminated from dirt and germsassociated with toilets. Each timethis is triggered, he becomesanxious - experiencing physicalfeelings and unhelpful thoughtswhich leads to him avoiding certainsituations. Avoidance leads Pete tofeel less anxious but this relief inanxiety is only temporary until thenext time it is triggered. Thisprocess is called the vicious circleof anxiety.

14 15

the vicious circle of anxiety

The vicious circle

To make this clear I will useanother case study to explain thevicious circle of anxiety. Murrayhas shy bladder syndrome. Hisfearful situation is using the toiletparticularly when other people arearound. In this situation or evenwhen thinking about it, Murraybecomes anxious and panicky. Torelieve this anxiety, Murray avoidsgoing out whenever possible andavoids travel. Murray also uses anumber of safety behaviours such

as limiting the amount he will drink before going to specific places -hence avoiding the need to usethe toilet. Such avoidance resultsin a reduction in anxiety. Howeverthis reduction is only temporaryand reoccurs the next time asimilar situation arises.

triggerdirt or germs

anxiety/panic

behavioursavoids all public toilets

where possibleavoids sitting on toilet

uses towels to turn on taps

relieves anxiety

temporarily until the next time

a trigger occurs

More research is needed on this condition. By improvingunderstanding, we would hope to see improvements in themanagement of this condition.Currently it is generally acceptedthat CBT (Cognitive BehaviourTherapy) is the most effective form of management for ToiletPhobia and its associatedconditions. However as everyoneis different, people may find othermethods work for them and so we have included information onother available treatments.

Generally recommendedtreatment:

• Cognitive Behaviour Therapy(CBT)

Other treatments whichmay be of use:

• Graded Exposure

• Clinical Hypnotherapy

• Diet

• Relaxation

• Exercise

• Medication

What is CognitiveBehaviour Therapy(CBT)?

CBT is based on the vicious circleof anxiety, as described earlier. It helps people overcome theiranxiety by working with people'sthoughts and behaviours.

Cognitive restructuring is a way ofchanging our unhelpful andanxious thoughts by looking atthem and challenging them. Whenwe are anxious or panicky wehave many unhelpful thoughtssuch as "I am going to soilmyself", "I might pick up a bug andbecome ill", "I won't be able tourinate in a public toilet". Theseunhelpful thoughts often stop usdoing things that we want to. Themore unhelpful thoughts that wehave, the stronger they becomeand then we have even moreunhelpful thoughts. It is yetanother vicious circle.

The features of unhelpful thoughts are:

• They are automatic - we don'tthink them on purpose, they justappear in our heads

• They seem believable and real atthe time they appear

• They are the kind of thoughtsthat would upset anybody

There are 3 main stages tocognitive restructuring. These are:

• Identifying exactly what thecontent of your unhelpfulthoughts are

• Doing something to help youexamine the thought moreobjectively. Sometimes thisincludes collecting 'evidence' as tohow accurate the thought really is

what types of help are available?

16 17

• Finally, reconsidering the thoughtin light of the evidence you havecollected. You can then test thethought by doing a briefexperiment (like exposure) tosee whether it is true or not.

For example, using Emma's story,one of her thoughts is probablycentred on the belief that shewould loose control of her bowelsif she did not take the Imodiumwhen her mother was at work.

In cognitive behaviour therapy wewould look at this thought in detail,for example, by asking Emma torate how much she believed it andwhat emotions the thoughtevoked. Emma would then beencouraged to challenge thethought. The simplest way of doingthis would be to ask Emma toidentify the evidence for andagainst the thought. Havinggenerated a list of evidence wewould ask her to rate the thoughtagain; usually the intensity of thethought reduces following thisexercise. We would then try todevise an experiment to testwhether the thought was a fact.For example, we might suggestthat she does not take theImodium when her mother is atwork and see if her prediction thatshe would loose control of herbowels is true. We would thenchallenge other thoughts in asimilar manner.

Accessing CBT:You may have to wait some timefor CBT if you want to access itthrough the NHS as waiting listsare often long. Your GP howevermay be able to refer you to yourlocal primary care mental healthservice which usually offers brieftherapeutic interventions which areunderpinned by CBT.

You can also access CBT throughthe NPS. We have a team ofvolunteer trained therapists whooffer their time to NPS members atspecial reduced rates. We are alsoable to offer CBT over the phone.

CBT can also be accessedprivately. For more information onthis and to find out aboutaccredited CBT practitionerscontact:

The British Association forCognitive and BehaviouralPsychotherapies(BABCP)The Globe CentrePO Box 9AccringtonBB5 0XB

Tel: 01254 875277www.babcp.org.uk

What is GradedExposure?

Graded Exposure means graduallyfacing your fear until anxiety falls.From the vicious circle of anxietywe know that avoidance, escapeand undertaking other safetybehaviours reduce anxiety but onlyon a short term basis. We knowthat confronting anxiety will lead toit decreasing on its own (usuallywithin 40 - 60 minutes). However,exposure is not about confrontingyour biggest fear in one go, it isabout starting with your smallestfear and progressing to greaterfears; facing them systematicallyand gradually- hence the term‘Graded Exposure’.

If you want to use GradedExposure it is helpful to list all thesituations you avoid from the leastdifficult to the most difficult. Themost important thing aboutGraded Exposure is that it shouldbe practiced regularly (every day ifpossible). It is also helpful to havesupport from friends/familymembers.

In Emma's experience, her lowestfear might be to resist takingImodium when her mother is atwork and her largest fear might begoing out and eating a meal. IfEmma resisted taking the Imodiumwhilst her mother was at work andtolerated the subsequent anxiety,it would reduce gradually. If she

did this every day for a week orso, it would be likely that heranxiety would have reduced to theextent that she would feelconfident that she was not goingto have a problem with her bowelsand could then move onto thenext fear.

What is ClinicalHypnotherapy?

Some people find this form oftherapy helpful as it focuses onbringing about deep levels ofrelaxation and therefore helpsreduce levels of stress andanxiety. Clinical Hypnotherapy isnot the same as Stage Hypnosisand should be practised by anexperienced ClinicalHypnotherapist.

Accessing ClinicalHypnotherapy:

If you are a member of NPS youcan access our in-house therapyservice for Hypnotherapy and theother related therapies, such asthe Fast Phobia Technique, Neuro-Linguistic Programming(NLP), Eye MovementDesensitisation and Reprocessing(EMDR), Thought Field Therapy(TFT), Emotional FreedomTechniques (EFT) and a range ofother holistic therapies such asaromatherapy, reflexology etc.

18 19

Some people find Reiki, Yoga andother complementary therapiesuseful.

For further information please callthe helpline on 0870 122 2325 or visit our website: www.phobics-society.org.uk

You can also accessHypnotherapy privately throughthe British Society of ClinicalHypnosis (BSCH) Tel. 01262 403603www.bsch.org.uk

Diet

Some people find that their diet isa particular problem due to theconnection between eating andneeding the toilet. Many sufferersadapt their eating habits toaccommodate their fear ofneeding to use a toilet. Somepeople may avoid eating at all ifthey can whilst others will only eatcertain types of food they knowwill not affect them. Somesufferers will reduce their fluidintake or completely avoid fluids atcertain times.

It is important to try to eat asensible, balanced diet and it isrecommended that sugar fixesand caffeine are avoided. Drinkingwater is beneficial but again this isposes a problem for sufferers ofToilet Phobia. However, goodnutrition and fluid intake underpingood health. If you are physically

unhealthy this can lead toweakness and tiredness which inthe long run can make anxietyworse.

How can relaxationhelp?

Relaxation training is a techniquethat aims to reduce physicaltension in the body. It also helps tolower the heart rate, bloodpressure and slow down the rateof breathing. People mayexperience a feeling of well-beingand tranquillity. Relaxation Trainingfor many is a very valuable andlife-long skill to acquire. There aremany teach-yourself videos, DVDsand tapes available to buy whereyou can learn relaxationtechniques.

The NPS shop has a variedselection of such products - visit our website at: www.phobics-society.org.uk

How can exercisehelp?

We all know that exercise keepsus not only physically healthy, butmentally healthy as well. Anyexercise will release the body'snatural endorphins creating a feelgood 'buzz' and raises self-esteem. Exercise also helps tolower stress levels and thereforeaids the management of anxiety.

There are numerous exercisebooks, DVDs etc. which can helpyou put together an exercise planwhich can then become part ofyour daily life.

How can medicationhelp?

Like most anxiety disorders,medication (usuallyantidepressants), may be of help.You should discuss this possibilitywith your GP. NPS has aPsychiatric Pharmacy Helplinewhich offers information andadvice on any form of psychiatricmedication to its members.

Can I talk to otherswho will understand?

Gaining support from other peopleis often extremely useful inbeginning to manage an anxietycondition. Talking to other peoplewho have had similar experiencescan be the first step toacknowledging and seeking helpfor a problem. Talking takes awaythe need to explain or justify youranxiety and most importantly forToilet Phobia sufferers, it reducesthe embarrassment experienced.Many people benefit greatly fromsupport groups, as well as frominternet support and informationwebsites.

NPS operates a chat room andan online bulletin board for itsmembers, where you can meetother anxiety sufferers andshare knowledge, experiencesand coping mechanisms. Youcan become an NPS member byvisiting our website or by callingus on 0870 122 2325. There isa small fee per annum to join.

20 21

“If we go in a pub/ restaurantI always need to know wherethe loos are and I hate it ifthere is a queue in the ladiesas this adds to my anxiety.Toilet Phobia affects ourplans for holidays or days out to places I'm not familiar with.”

“Toilet Phobia affects my lifegreatly. I am always planningwhen it's going to be 'safe' togo to the toilet and make sureno-one knows where I'mgoing. Holidays are a particularproblem as I find it impossibleto 'go' when someone else is in the room.”

“I have had to inform mydoctor because he was tryingto get me to eat breakfast,which makes me need to goto the loo and inhibits my travelling to work.”

“I cannot go abroad as I am not sure what the toiletsituation might be in any townI visit. My wife would love togo to Paris but I cannot bear the thought of it”

“I can afford to do lots ofthings; I am qualified to dolots of things; but I am unable to do anything.”

“My sons live far away but I could not visit them and they thought I was beingunsociable”

“I will stop drinking hoursbefore an appointment. I knowI am ruining my kidneys but it doesn't matter”

“I would rather be consideredunsociable than to tell people the truth”

“It's like being in a prison - but an invisible one”

“I have not told anyone, even my husband”

“After using the toilet I will onlytouch the taps or doors if Ihave a paper towel. If I don'thave a paper towel I will use my elbows or feet”

“I have curtailed any promotionchances I have at work as it may involve travelling to meet clients”

“My problem is life-inhibitingand I live a deviant life”

real l ife experiences

“I have made contact withanother sufferer through NPS.This has helped enormously asthe support we give each otheris invaluable. Talking to some-one who understands has been a big step forward.”

“I have been seeing a CBTpractitioner and have foundthat I am more able tochallenge my behaviours and face my fears aroundToilet Phobia”

“The thing that really helped me was ClinicalHypnotherapy”

“I did an Anxiety Managementcourse which I found reallyhelpful and it helped me torealise the social aspect of my problem”

“At the moment I am trying tohelp myself by slowly exposingmyself to my fear. So, forexample, building up the amount of time I can last on thetrain and stopping myself constantly going to the toilet before I travel”

“I correspond with a pen-pal I found through the internet,which has been really helpfuland comforting. Although he doesn't suffer from Toilet Phobia he is very understanding as he suffers from panic attacks”

“I had telephone counsellingtherapy with NPS which helpedme to learn methods of dealingwith general anxiety and Toilet Phobia”

“I tried Reiki and learned to do it for myself. I find this quite helpful”

“I eventually got NHS CognitiveBehaviour Therapy after aconsiderable wait. This wasuseful in giving me copingtechniques”

“I have been receiving helpnow for the last 3 months froma psychologist. He is fantasticand already I know he hashelped me so much. I havegone from not being able to goout of the gate where I live, tonow being able to walk aroundthe block all on my own. Somedays are better than others butnow I have the support fromthe right people, I believe that Ican beat this. I know I am atthe beginning of a long journeyto recovery but I now believethat there is light at the end of the tunnel”

success storiesWe are all different andexperience anxiety uniquely.Similarly people have a variety of experiences of treatment:

22 23

If you recognise, or are affected by any of the symptoms ordifficulties in this booklet please don't delay seeking help.

Toilet Phobia is not a sign of weakness. Whatever the cause ofyour difficulty, you do not need to be alone with Toilet Phobia;help is available.

Call the NPS helpline - in total confidence on 0870 122 2325

NPS’ Commitment

We are committed to providinginformation and support for anxietysufferers. Furthermore we arecommitted to alleviating thedistress caused by anxiety and tohelp develop greaterunderstanding of anxiety disordersand their treatment. We supportmany people with toilet-relatedanxiety problems and know thatdue to the particularly distressingand embarrassing nature of thisproblem, people are oftenreluctant to seek help. We hopethat this guide will go some way toexplaining Toilet Phobia, how itmanifests itself and what can bedone in terms of self-help andtreatment.

We would like to express ourthanks and appreciation to allthose who helped in thecompilation of this booklet,particularly those who gave theirpersonal experiences. Thecontributions of everybodyinvolved have been invaluable.

Acknowledgements:

The Lewis Family Charitable Trustis pleased to support the NationalPhobics Society in its nationalproject highlighting the incidence,effects and treatment of thisimportant condition 'Toilet Phobia'.In doing so, they hope to supportthose affected, their families andprofessionals.

This information has beencompiled by Pauline Gregson,Clare Mayo and Nicky Lidbetter ofthe National Phobics Society witheditorial support from ProfessorKarina Lovell of The University ofManchester.

your next stepAgoraphobia Agoraphobia is a complex phobia

usually manifesting itself as acollection of inter-linked phobias.For example, many agoraphobicsfear being left alone (monophobia),dislike being in any situation wherethey feel trapped (exhibitingclaustrophobia type tendencies)and fear travelling away from their'safe' place - usually the home.Some agoraphobics find they cantravel more easily if they have atrusted friend or family memberaccompanying them, however thiscan quickly lead to dependency.The severity of agoraphobia variesbetween sufferers from those whoare housebound, even room-bound, to those who can travelspecific distances within a definedboundary.

CBT Cognitive Behaviour Therapy is atreatment option for anxiety. Thefocus is on specific psychologicaland practical skills (e.g. in reflectingon and exploring the meaningattributed to events and situationsand re-evaluation of thosemeanings) aimed at enabling theclient to tackle their problems byharnessing their own resources.

Clinical A treatment that attempts to Hypnotherapy address the client's subconscious

mind. Hypnotherapists often (butnot exclusively) require the client tobe in a relaxed state, enlisting thepower of the client's ownimagination and may utilise a widerange of techniques from storytelling, metaphor or symbolism tothe use of direct suggestions forbeneficial change. (GeneralHypnotherapy Register).

Cognitions Mental processes such as memory,attention, perception, action,problem solving and mentalimagery and emotion. Also includesone's awareness of strategies andthoughts.

Defecate The act or process by whichhumans eliminate solid or semisolidwaste material from the body.

Emetophobia An excessive or irrational fear ofvomiting or of being around otherswho are vomiting. Sufferers areknown as Emetophobics and areknown to go to great lengths toavoid people who may be sick orwhere a threat of infection isperceived

Generalisation A premise about a sample isapplied to a conclusion about thepopulation e.g. I had a badexperience in one toilet - I will havea bad experience in all toilets.

Graded A treatment method based on the Exposure idea that a therapeutic effect is

achieved when sufferers confronttheir fears in a systematic manner,discontinuing the escape response.

NHS National Health Service

NICE National Institute for Health andClinical Excellence

NPS National Phobics Society

OCD Obsessive Compulsive Disorder. An anxiety disorder based onobsessions, compulsions andrituals.

Panic An anxiety disorder characterised Disorder by repeated and apparently

unprovoked panic attacks. A panicattack is a period of intense fear orpsychological distress, typically ofabrupt onset. Symptoms mayinclude trembling, shortness ofbreath, heart palpitations, sweating,nausea, dizziness andhyperventilation.

Parcopresis Parcopresis can be described asthe inability to defecate when otherpeople are perceived or likely to bearound (e.g. in the same publictoilet, the same house, or the samebuilding). This inability limits thesufferer to being able to defecateonly in a limited number of 'safe'places thus restricting their lifestyle.

Paruresis Paruresis is also known as peeshyness, shy kidney, bashful bladderor shy bladder syndrome. It is atype of social anxiety disorder, thatcan affect both men and women, in which the sufferer is unable tourinate in the (real or imaginary)presence of others, such as in apublic restroom.

Social Phobia/ Social anxiety is an experience of Social Anxiety fear, apprehension or worry

regarding social situations andbeing evaluated by others. Peoplevary in how often they experienceanxiety in this way or in which kindsof situations. Anxiety about publicspeaking, performance, orinterviews is common. Socialanxiety disorder or social phobia, is an anxiety disorder involvingoverwhelming anxiety andexcessive self-consciousness ineveryday social situations. Peopleexperiencing social anxiety oftenhave a persistent, intense, andchronic fear of being watched andjudged by others.

Toilet Phobia A term used to describe a range of anxiety related conditionsassociated with the use of the toilet

Urinate The passing of urine

glossary