SURVEY OF EMETOPHOBIA SUFFERERS

PLEASE NOTE: THERE IS TO BE  NEW EMETOPHOBIA SURVEY IN 2001, HEADED BY A CONSULTANT PSYCHIATRIST IN PARTNERSHIP WITH GUT REACTION.  PLEASE SEE LATEST NEWS PAGE FOR FURTHER INFORMATION.

SAMPLE RECRUITMENT : Between Autumn 1995 and Spring 1998, over 750 replies were been received in response to national press appeal and features in regional newspapers, retirement magazine - 'Choice', health magazine - 'Top Sante', features in 'Best', 'Woman' and 'Woman's Realm' magazines and via UK self-help groups such as First Steps to Freedom, No Panic, Anxia and the National Phobics Society. Respondents replied with letters giving details of their symptoms and were sent a questionnaire to complete and return, often enclosing a further letter giving a deeper insight into problems and treatment obtained. Due to the recruitment method for the sample, there was a heavy bias towards female respondents (95%) although many men also suffer.

PROFILE : The mean age of onset is 9.35 years (range 3-28) while the mean current age of sufferers is 36 years (range 21- over 70) giving a mean of 26.6 years spent suffering from emetophobia. Most sufferers had no idea what had initially triggered their phobia but some were able to recall unpleasant childhood experiences of vomiting. 24% had a friend or relative with some degree of emetophobia. Emetophobia is often a closely-guarded secret and many sufferers (21%) had confided only in their partner while others had suffered in silence for years (4%), making elaborate excuses to avoid potentially difficult situations or social engagements. 70% of sufferers were employed (including self-employed and/or working from home) but very few had explained their phobia to any work colleagues. Apart from their emetophobia, 94% of respondents felt they had fair (25%) to good (51%) or excellent (17%) health.

GP RESPONSE : 66% had consulted their GP which suggests their symptoms had become distressing and that they wished to take positive steps to overcome the phobia. In many cases, due to shame and embarrassment, sufferers approached their GP only as a last resort having tried hypnotherapy and other alternative therapies without success. Of these, only 31% found their GP fairly or very understanding/sympathetic while others felt their GP did not understand the problem or they met a negative reaction such as being told to "get a job". 35% were referred to a Clinical Psychologist, 23% to a Psychiatrist, 10% to a Psychiatric Nurse and 5% to a Counsellor. A later small-scale GP survey revealed that the majority of GP's felt their training did not equip them to effectively treat phobias and they were only too glad to pass on phobic patients to the Mental Health Services. Of various Specialists who responded, anaesthetists were the most familiar with emetophobia and were sympathetic towards it.

TREATMENT METHODS USED : Methods used by such included basic counselling and talking about the problems or maintaining 'Anxiety Diaries' and recording panic attacks and 'dysfunctional thoughts'. Few emetophobes referred to a Clinical Psychologists were given specific tasks to undertake although one, whose emetophobia had a largely social context, claims to have benefited from tasks such as practising exiting meetings and other anxiety-provoking situations. A small number of other sufferers were asked to watch a 'vomit video' but ceased attending therapy sessions as the anxiety and tension became unbearable. One sufferer had to carry a glass jar containing vomit and empty a vomit bowl down a toilet. While she feels she may have been desensitised to some extent from the sight of vomit, her fear of herself vomiting shows no improvement. Others reported being unable to eat properly after undergoing this form of treatment and were hospitalised for up to one year and fed via an IV drip (7 respondents) while the remainder still have difficulty eating several years later and at least seven feel able to consume only fluids and liquid diets such as Complan. One Clinical Psychologist devised a list of symptoms to confront ranging from abdominal pain, dizziness, giddiness, faintness and nausea to actual vomiting (stimulated via administration of an emetic). However, this programme was too impractical to pursue since the nausea was not situation-related and symptoms could not be created 'upon command' during sessions. Where emetophobes had suffered vomiting during their phobic years, several admitted they felt better immediately after vomiting but the fear remained and was actually escalated in many cases (and sometimes led to hospitalisation), hence confrontation does not appear to provide any lasting benefit. Relaxation and deep-breathing exercises were sometimes helpful in dealing with anxiety in general, but did not begin to tackle the underlying emetophobia problem.

MEDICATION : 36% of sufferers were prescribed anti-emetic drugs: Stemetil 15%, Maxolon 13%, Motilium 8%, Fentazin 1% and Cinnarizine 1%, while 25% received anti-depressants, the most common of these being Clomipramine. Later respondents have found some benefit from Seroxat for panic disorder but often discontinued treatment due to side-effects of nausea. 10% received Diazepam while a further 8% received another type of tranquilliser and 3% were prescribed Propranolol. Whilst anti-depressants may have reduced generalised anxiety by sedating the patient, they did not seem to help the phobia. Anti-emetics such as Stemetil (prochlorperazine), Motilium (domperidone) and Maxolon (metoclopramide) were felt to have a greater benefit (which could have been partly psychological 'reassurance') than any benefits gained from psychological methods such as rationalisation, positive thinking and relaxation exercises. Diazepam helped relieve some anxiety in the short-term, but did not tackle the root problem of the fear of vomiting.

NAUSEA/PANIC ATTACK TRIGGERS included: travelling, hearing about circulating stomach bugs, seeing or hearing someone vomit - including simulated vomiting scenes on TV, PMS, menstruation, stomach/abdominal pain, diarrhoea, hunger, fatigue, being away from home, and migraine. 15% suffered from IBS, 6% suffered migraine, a further 6% suffer from diagnosed  vertigo/balance disorders and 7% suffer from a gastric/duodenal ulcer - all of which can trigger symptoms of nausea.

FREQUENCY OF ATTACKS - 26% experienced nausea up to six times per month, 16% - 7-12 times, 22% - 13-20 times, 22% - 21-31 times and 14% experienced some nausea every day. The duration of attacks varied considerably: 35% felt sick for up to three hours , 11% for 4-6 hours, 5% for 7-11 hours, 8% for 12-24 hours and 12% suffered nausea lasting between 24-72 hours suggesting this could be more than a mere panic reaction. During this period sufferers strive to distract themselves from their nausea as far as possible by sucking antacids or strong mints reading, listening to relaxation tapes, watching TV, deep breathing and most go to bed if possible. Of the first 75 responses received, 63% were phobic about feeling nauseous and the fear of the fear of either/both nausea and/or vomiting. The fear of themselves or others vomiting scored equally at 77% while 80% also worried about vomiting in public. From the full sample of respondents, 67% preferred to be at home, ideally with a supportive partner nearby (24%) incase needed, or alone (17%). Only 5% always feel as if they are actually going to vomit, 16% often feel they might, 50% occasionally feel they will, 25% rarely feel they will while only 3% are relatively confident that they will NOT actually vomit.

SYMPTOMS - A summated rating score has been calculated for each of the following symptoms.

SUMMATED FREQUENCY SCORES

An open-ended question generated a list of other symptoms/reactions to nausea including: uncontrollable shaking, tearfulness, weakness, poor co-ordination and fatigue - all being typical panic responses.

VOMITING FREQUENCY - despite suffering from frequent nausea, emetophobes display a high level of 'vomiting continence' and rarely seem to actually vomit compared with the average person who might vomit once or twice per year. 46% had not vomited at all for more than 10 years (some of whom had not vomited for well over 30+ years). 56% had not vomited in the last 6 years and only 24% had vomited in the last 3 years.

EFFECT ON QUALITY OF LIFE - sufferers clearly feel their lifestyle is controlled by their emetophobia which places many restrictions on the activities they may pursue or enjoy, sometimes to the extent that emetophobia becomes a lifestyle in itself. In several cases marriages had been adversely affected since sufferers did not wish to get physically close to their partner incase they caught any infection, sometimes marriage had been avoided or postponed to avoid the stress of the ceremony or commitment to a specific activity on a set day. A few emetophobes confessed confidentially their sex-lives had been affected and/or sex-drive lost and one respondent admitted to undergoing a course of 'Sex Therapy' to try to tackle the phobia using an 'indirect' approach.

A summated difficulty-rating score has been calculated for each of the following activities:

SUMMATED DIFFICULTY SCORES

* Pregnancies, in many cases, were accidental rather than planned and relatives were often living nearby to help with sick children when required.

** Despite employment difficulties, wide ranges of occupations were represented throughout the social strata (B-E inclusive). Some sufferers are self-employed or have been forced into working from home due to their phobia and fear of catching bugs.

This indicates a large degree of difficulty in undertaking a range of 'normal' activities and illustrates the debilitating effects of emetophobia on a sufferer's quality of life. An analysis of the above reveals that 67% feel their employment opportunities are limited, 92% would find it difficult or refuse to undergo medical treatment/investigations, 97% would be hesitant to take prescribed medication without first checking for side-effects of nausea/vomiting. Only 8% are happy to use public transport and 90% have difficulty travelling as a passenger. A UK holiday presents far less difficulty than an overseas trip but nearly all sufferers, 94%, are unable to go away on holiday with ease and the same proportion have some difficulty eating away from home.

OTHER PHOBIAS - A very small proportion of respondents referred to the presence of other phobias. Of this group, agoraphobia accounted for 34% of these 'other phobias', insects/wasps/spiders (14%), claustrophobia (13%), social phobia (11%). Many of these respondents claimed to suffer with multiple phobias ie they felt their agoraphobia, claustrophobia and/or social phobia was directly caused by their emetophobia. It was also felt that these latter phobias were 'socially acceptable' but that emetophobia was not. The remaining sufferers' conditions (ie phobias of flying, deep water, heights, dental phobia) were described as very mild and not particularly incapacitating or too distressing.

FEELINGS ABOUT EMETOPHOBIA - only 14% feel their emetophobia has improved over recent years, 37% feel there has been no change while the majority (49%) feel their condition has deteriorated. 75% feel despairing about their phobia, 73% are depressed by it and 31% have felt suicidal at some stage. Only 2% feel any optimism. An open-ended question generated expressions of disappointment, sadness and frustration with the condition via terms such as: restrained, controlled, fed up, let down, anger at being unable to beat it, ruins and dominates life, life is passing by, feel very alone with problem, ashamed, feel a failure and unable to lead a normal life. Additionally, respondents commented they felt their emetophobia was affecting their health in other ways such as being unable to accept medical treatment when it was required, tooth decay due to constantly sucking strong mints, excessive use of antacids and indigestion remedies and a reluctance to attend a GP's surgery when suffering from an illness due to the fear of catching another infection, the stress of the consultation and the fear of drug/treatment side-effects. Three respondents referred to their refusal of chemotherapy or  radiotherapy for cancer treatment. There was a general feeling that the medical profession are not very interested in this condition which is often regarded simply as a symptom of a neurotic personality or 'all in the mind'. Some GP's had never heard of emetophobia while others said it was as common as arachnophobia. One even confessed he was mildly emetophobic himself.

QUALITATIVE INSIGHTS : accompanying, descriptive letters have given a qualitative insight into how sufferers' lives are affected and the extreme behaviour followed to avoid anyone who is ill or the risk of contracting any infection. A selection are listed:

CONCLUSION : Emetophobia, clearly, can be a most distressing and debilitating condition - probably more so than other phobias since the sufferer can NEVER escape from his/her fear. It can affect every aspect of a sufferer's life and that of their friends and families. In some cases, the sufferer becomes a virtual social recluse to avoid contact with others. In all cases, sufferers feel that every day is a battle and barely a day (or night- since vomiting often features vividly in dreams) passes without them being affected, to some extent, by their emetophobia.

General awareness of the phobia appears low amongst the medical profession and many practitioners do not appear to know how to treat the condition which is both unpleasant, and, unless an emetic is deliberately administered, is less easily confronted than other phobias. Possibly they are unaware of extent to which it affects sufferers' lives and its far-reaching effects since sufferers often find they cannot communicate their fears to anyone other than another sufferer and merely talking about it can bring on feelings of anxiety, nausea and panic, during which it is difficult to talk. Cognitive therapy involving rationalisation can help put the fear into perspective but the phobia still tends to persist. Counselling, hypnotherapy, aromatherapy and other alternative treatments do not appear to provide any lasting benefit. Relaxation and deep-breathing exercises are useful for general relaxation but sufferers find them difficult and irrelevant when feeling nauseous since the feelings of nausea overwhelm and dominate to the exclusion of everything else. Behavioural Therapy can encourage sufferers to continue 'normal' activities but rarely treats the actual phobia itself. Exposure to the fear, either graded, 'flooding' or even deliberately inducing vomiting seems to reinforce the unpleasant nature of vomiting and can actually add further to the phobia and it is noted that emetophobes who do actually vomit for whatever reason, more often do not lose their fear of it. However, when the sufferer fears OTHERS vomiting, rather than themselves, systematic desensitisation by watching 'vomit videos', combined with Cognitive and Behavioural Therapy can produce lasting results and a marked reduction in the fear.

Emetophobia is not generally talked about and it is suspected there are probably a large number of other sufferers, who have probably suffered since their early childhood, whom this survey did not reach. However, since the survey/research began in 1995, emetophobia is no longer an unknown condition but has attracted media and medical attention and is now listed as the 5th most common phobia.

NOTE: IF you're having trouble being taken seriously by your doctor or therapist, why not take along a printout of this page to help add credibility to your case to stress that you're not alone and that emetophobia is a real problem and affects many aspects of your life.