‘Toilet Phobia’-Getting to the Bottom of ItNational Phobics Society,Zion CRC,339 Stretford Road, Hulme,Manchester, M15 4ZYTel: 0870 122 2325Fax: 0161 226 7727Email: info @phobics-society.org.uk Registered Charity No: 1113403Company Registration No: 5551121

Gathering Information

Flyer sent out with newsletter- asking individuals with TP to contact us.

Sourcing existing NPS members for TP sufferers

Contacting individuals via telephone- Interviewing and recording case studies from those affected by TP

Contacting individuals via internet- UK Toilet Phobia Group

- NPS Bulletin Board

Case Study Information

We asked all TP sufferers:

-Age, location, gender-Background information on the way TP had developed-Type of TP-How it had affected their daily life-Treatment (if any)-Ability to discuss TP with others

Statistics from NPS Research

22 individuals responded to the flyer 18 of these were female and 4 were male - approximately a 5:1

female to male ratio The majority of females were affected by agoraphobia related

TP whilst the majority of males were affected by AP The ages of the individuals that responded to the flyer ranged

from 21-79 years. 55% were under 40 years old 75% were under 50 years old The geographical location of TP sufferers was evenly spread

Incidence of Associated Conditions

AgoraphobiaRelated

Social PhobiaRelated

Agoraphobia +Social Phobia

Specific Phobia

Other

Emerging Themes

It was clear that people would like the subject to be more openly talked about, however, they were not prepared to go public themselves.

The majority of people spoken to agreed to help with the booklet but did not want to be identified as a sufferer

Several people said they would admit to others that they were affected by anxiety but would not admit to having TP

Themes Continued …

A number of people identified a particular incident, usually in childhood (and several within school) as a trigger point for TP

Also: Learnt behaviour was identified as a factor

for TP behaviour

Themes Continued…

TP was reported as being restrictive to varying degrees– particularly around travel, social events and work.

Exacerbating factors include: layout and design of toilets, queuing, cleanliness, availability of toilet paper and soap etc.

Several people would not discuss TP issues with their GP for fear of being thought ‘mad’

Avoidant behaviour

Restricting travel Adapting eating and drinking patterns Avoiding social gatherings and events Restricting employment opportunities Deceptive behaviour around TP issues Avoiding using hands to touch seats/ taps/ doors etc Avoiding using urinals Avoiding use of the toilet

Safety Strategies

Taking Imodium Carrying changes of clothes and adapting

clothes to hide ‘accidents’ Using panty-liners, sanitary towels etc Carrying deodorant Using cubicles rather than urinals Carrying toilet paper Preplanning routes to include toilets

Coping With TP

A strong message emerged that making contact with fellow sufferers helped with support and reduced isolation

Talking therapies helped at the time, although most TP sufferers said that they reverted back to their previous behaviour some time after therapy ended

Help for TP is often difficult to access

Voices

“I’ve not told anybody, not even my husband”

“I always plan when it is ‘safe’ to go to the toilet and I make sure that nobody knows”

“Queuing for toilets can cause me extreme anxiety”

“I restrict my fluid intake and wear panty-liners or sanitary towels so that I feel more secure”

“I don’t go out much because of my phobia, which means I don’t see many people. I know I appear unsociable”

Examples of How NPS can Help

Booklet on TP DVD on TP Support and information services including

internet chat room and helpline Therapy services (inc. CBT, Hypnotherapy,

Counselling, Alternative Therapies) Increasing contact between TP sufferers