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Devotees, Pretenders And Wannabes: Two Cases Of Factitious Disability Disorder.by Richard L. Bruno, Ph.D.
Despite having been described for more than a century, there is no understanding of the origin of the attractions, desires and behaviors of devotees, pretenders and wannabes (DPW's). Devotees are non-disabled people who are sexually attracted to people with disabilities, pretenders are non-disabled people who act as if they have a disability by using assistive devices and wannabes actually want to become disabled, sometimes going to extraordinary lengths to have a limb amputated. Two cases are presented in an effort to understand the psychology of DPW's and to suggest one psychologic concept - that of Factitious Disability Disorders - that may explain not only the obsession to be with disabled persons, but also the desire to pretend to be disabled and even the compulsion to become disabled. Also presented is a combined cognitive-behavioral approach to modify DPW's obsessions and compulsive, intrusive, illegal and sometimes self-injurious behaviors.
The advent of the Internet has brought to the attention of people with disabilities individuals who had heretofore largely remained hidden: Devotees, pretenders and wannabes (DPW's). Devotees are nondisabled people who are sexually attracted to people with disabilities, typically those with mobility impairments and especially amputees; Pretenders are nondisabled people who act as if they have a disability by using assistive devices [e.g., braces, crutches, and wheelchairs] in private and sometimes in public, so that they 'feel' disabled or are perceived by others as having a disability; Wannabes actually want to become disabled, sometimes going to extraordinary lengths to have a limb amputated. (1)
While the most common Internet bulletin boards, chat rooms and web sites are for male devotees of female amputees, others are for male and female, heterosexual and homosexual, plaster cast, crutch, leg, back and neck brace and even orthodonture DPW's. (1,2) An America Online bulletin board posting entitled "Bunion Love" requested "photos, videos, or correspondence dealing with gals [having] deformed/crippled feet, or toe/toes amputated . . . or who have severe bunions on their feet. The more severe, the better."
However, the Internet is by no means providing the first information on DPW's. Since the late 1800's the medical literature has described men and women who are sexually attracted to amputees, those who limp, or use crutches, braces and wheelchairs, as well as individuals who pretend to be or who actually want to become disabled. (3-13).
DPW's interest in amputation has been the most frequently documented. Cases of men and women who are attracted to amputees, who themselves want to have amputations and who have successfully become amputees have been described since 1882. (3,10,11,14-17) Money (14), who has focused on the interest in amputation, coined the terms apotemnophilia (achieving sexual fulfillment by fantasizing about being an amputee) and acrotomophilia (requiring amputee partners, real or in fantasy, to achieve sexual satisfaction).
In 1983, Dixon (18) published results of the first survey of male acrotomophiles, individuals who were customers of AMPIX, a company providing stories about and pictures of amputees. The 195 acrotomophiles were college educated, professional, white males, 75% of whom had been aware of their interest in amputees by age 15. Although 55% of respondents had dated amputees and 40% had had sex with an amputee, only 5% had married an amputee. Fifty-three percent of the respondents had pretended to be an amputee (11% having done so publicly) and 71% had fantasized about being an amputee, indicating that the majority of devotees were also pretenders and wannabes.
Consistent with these data is a recent study of 50 acrotomophiles by Nattress. (3) Again, subjects were college educated, professional, white males, 96% of whom had been aware of their interest in amputees by their teens. In this sample, 41% had been married to or lived with an amputee, more than 43% had pretended to be amputees and 22% desired to become amputees.
On psychometric testing, the 50 acrotomophiles were found on average to have high scores on self-esteem and intuitive thinking, but low scores on social interest, emotional stability and personal relations. The low scores were referred to by Nattress as "problematic behavior tendencies." Such tendencies have become a concern of people with disabilities since devotees do demonstrate problematic behaviors, ranging from collecting names, addresses and phone numbers of disabled persons, to obsessive and intrusive phone calls, letters and e-mail to persons with disabilities, attending and sometimes organizing disability-related events, lurking in public places to watch, take covert pictures of, talk to and touch disabled persons, and even engaging in predatory stalking. (1,3,19) For example, over 85% of Nattress' sample agreed with the statement, "If I see a female amputee at a shopping mall I will follow her," and over 57% agreed that, "If I see a female amputee in a store I will try to talk to her."
In spite of more than a century of description, the origin of DPW's attractions, desires, and behaviors has yet to be determined. The following cases are presented in an effort to understand the psychology of DPW's and to suggest a single psychologic model - that of Factitious Disability Disorder - that may explain not only the obsession to be with disabled persons but also the desire to pretend to be disabled and even the compulsion to become disabled.
Case 1: Devotee/Pretender
Ms. D. is a 48 year old white female who presented when her husband was evaluated for Post-Polio Sequelae (PPS). (20) (N.B.: Some demographic information and circumstances in the cases have been changed to protect the patients' anonymity.) She had been married for ten years to her husband, a 55 year old polio paraplegic who walked with forearm crutches and two knee-ankle-foot orthoses. She presented crying and agitated after reading an article in New Mobility magazine entitled "Devotees of Disability." (1) "I am all of this," she said tearfully, "I can't live with this inside of me any longer."
Ms. D. described herself as a devotee and pretender. She had been interested in men who had mobility impairments since she was a teenager. The first evidence of her interest was in high school when she dated a boy who had a severe limp, "He was very self-centered, not very likable, but I dated him anyway. I wanted to hold him, to feel his limp as we danced, to touch his hip and leg." Although they kissed, she reports not being very sexually aroused by him and was interested, not in having intercourse, but in being with him and potentially seeing his affected leg.
When Ms. D. went to college she would occasionally sketch men who were naked except for leg braces and crutches. She dated a number of non-disabled men in college and had her first sexual experience with someone who was not disabled, which she described as "very satisfying and orgasmic." However, she was constantly looking for disabled men. While visiting a museum she saw a man her own age walking with long leg braces and crutches, "I became flushed and flustered. I followed that poor man throughout the museum." She became despondent when she could not figure out a way to meet the man.
In graduate school she dated a teaching assistant who limped as a result of an amputation, "He would walk around in summer with loafers and no socks. I could not take my eyes off the cream-colored artificial foot I could see above his shoe." She reported not being attracted to this man but dated him anyway, saying, ""I wanted to hold him, to feel him limp and his artificial limb. I so very much wanted to sleep with him so I could see his artificial leg." Ms. D. suggested that they have sex but the man said he had never had intercourse and that he would not sleep with the patient because of he was an amputee.
Shortly thereafter, a singles magazine was mailed to her post office box. In it was a personal ad from a man using a wheelchair. Ms. D. answered the ad and arranged for a date. She met the man at his home and they had dinner at a restaurant, "He was obese and I think mildly retarded. But I was so excited to be seen in public with him." They went back to the man's home and began kissing. "Incredibly aroused" at first, her ardor quickly cooled. She excused herself, retired to the bathroom and masturbated to orgasm by imagining herself having sex with the man, "At the time I thought it was so strange. He was in the other room, but he did not excite me. Yet the thought of being with him, and especially seeing his wheelchair in my mind, is what brought me to orgasm." They did not continue to have sex nor did they meet again.
After finishing her graduate degree she began working for a large corporation. She continued to occasionally date non-disabled men and had sex that included orgasms. However, she continued to search, obsessively at times, for disabled men. Two or three times a year her interest would surface for up to a week, triggered by accidentally seeing a man with a limp, on crutches or using a wheelchair, "I would follow the man down the street or through a store, never able to figure out how to strike up a conversation." Occasionally, she would see a disabled man in the company of a non-disabled woman and feel, "sad and lonely. I would think to myself, 'I would love you more than she does. I could take better care of you than she can'."
For several days after seeing a disabled man she would drive to shopping centers on the way home from work and pass the handicapped parking spaces, try to catch a glimpse of another disabled man. After several days of unsuccessful searching she would become dejected and despondent, angry at herself for "giving in" to her compulsion.
Ms. D. rose to a position of responsibility in her company and traveled for at least one week each month. On one trip she noticed a wheelchair behind the front desk of the hotel, "It struck me that I could get a wheelchair while I was in a city where no one knew me and roll around as if I were disabled. Flushed with excitement, my heart pounding in my ears, I went to a surgical supply store and rented a wheelchair."
She drove to a mall, parked and pulled the wheelchair out from behind the front seat, "I slowly and laboriously pulled myself into the wheelchair, letting my legs drag. I was eager for people to watch me, to see that my legs couldn't move. I pushed myself into the mall, again looking to see if people were watching me. I was full of emotion. I felt whole for the first time in my life."
As she pushed herself through the mall, she realized that what she wanted was to encounter a disabled person, preferably a man. Not finding a disabled person, she returned to the car and reversed the same laborious process, dragging herself and then the wheelchair into the car, hoping that she would be watched. She returned to the hotel and researched the locations of other malls. Every night after her business meetings she drove to a mall "and became the disabled person I wanted to be. I was obsessed with being out in my wheelchair, to find someone who had a disability 'just like me'."
After several days she parked next to a handicapped parking spot where a man was getting out of his car, "He had a brace on one leg and a severe limp. I loved his watching me drag myself into the wheelchair, lifting my limp legs with both hands onto the foot rests. I felt an overwhelming arousal. I was flushed, my whole body was burning. I wanted to be with this disabled man...not sexually, although I would have. I just wanted to be with him, be seen with him, to be disabled with him." She did not pursue a conversation with the man and they parted.
Ms. D. flew home, stimulated by her "adventure." For her next trip she decided to bring a rented wheelchair to the hotel and "arrive as a disabled person." She found a surgical supply store in advance of her trip, booked a wheelchair accessible room at the hotel and picked up the rented wheelchair on the way from the airport, "I was again flushed and aroused. I loved the hotel staff looking at me wheeling through the lobby. The man behind the desk and the bellmen were so kind and thoughtful to me."
While at the hotel she went to the indoor pool, "I loved people looking at my paralyzed legs, wondering why I couldn't move them." She again traveled to local malls in search of "other disabled people." She would return to her room after these adventures and masturbate to orgasm while sitting in the wheelchair, "The fantasies that aroused me were not even sexual. I would imagine my legs being paralyzed or a man's paralyzed legs, or picture my being in a wheelchair, his walking on crutches, or his braces, and have an orgasm." She admitted that she could not remember having a masturbatory fantasy that did not involve disability since she had been a teenager.
Her ultimate fantasy was to meet a disabled man while she was pretending to be disabled and have sex, "I wanted to be accepted by a disabled person as being disabled myself." However, she denied strongly that she herself wanted to have a disability, "I wanted to be accepted as a disabled person, not become one. I remember sitting at a stop light and seeing a beautiful woman about my age in the car next to mine with a wheelchair behind the front seat. Without thinking I said to myself, 'Poor thing. I bet she never gets dates. I wouldn't really want to be disabled for anything'." Ms. D. admitted thinking at the time that this statement was bizarre given her desire to be seen as disabled in public and accepted by people with disabilities as "one of them."
Ms. D. did not rent a wheelchair on future trips, saying, "Pretending was exciting and even sexually arousing but frustrating, exhausting and not fulfilling."
When she was 38, Ms. D. met a new co-worker, "I was waiting to begin a meeting and in came a handsome man walking on forearm crutches and wearing two long leg braces. I couldn't talk, my whole body flushed and I almost passed out." She was introduced to this man and found him to be "pleasant and gentle, if quiet and shy." After taking several days "to recover my senses," she invited him to lunch and they dated frequently thereafter, "I was overwhelmed. All I could think about was being with him, being seen in public with him. I loved to have him next to me walking on his crutches. I loved to hear the metal 'clink' of his crutches and braces."
Over the next several months she went to great lengths to help him when he had significant difficulty dealing with company politics, "It was actually sexually arousing to me to be able to help him." Although they kissed and fondled each other on dates, they did not have intercourse for the first two months, "I enjoyed kissing. I would grab the top of his braces and pull him to me. Feeling the metal against my legs and was very arousing, but I was not eager for intercourse. I would go home and immediately masturbate, having orgasms remembering him on top of me and us walking together in public."
After two months they would take off their clothes while kissing but she arranged for him to keep his braces on. They finally had intercourse without his wearing braces and she was orgasmic, "The first time I was aroused by how thin his legs were, how they couldn't move. The second time I missed the feel of his braces. I had to look at the braces and crutches standing against the wall in order to have an orgasm. By the third time, I stopped having orgasms but would go into the bathroom afterward to masturbate, again imaging his braces or him walking with his crutches."
After six months he professed his love and asked her to marry him. By this time she was totally disinterested in sex but had come to care for him and enjoy his company, "I thought, 'You've found what you always wanted. Why shouldn't you marry him?'" They married three months later and moved into his accessible apartment.
Over the next years they lived companionably and she provided him with sex weekly although she stated, "I know it is ludicrous but I have to fantasize during intercourse that I am with some other disabled man just like him, with braces and crutches." Their frequency of intercourse decreased to about once a month as her company responsibilities grew and she began traveling about 15 days a month. She still masturbated several times per month, fantasizing about being with other disabled men, men with disabilities identical to her husband, "I know this is ridiculous. I have married my fantasy man. Why doesn't he arouse me?"
Over the last 5 years Ms. D.'s husband developed PPS, with bilateral shoulder pain from crutch walking, new arm muscle weakness and pain, back pain and increasing fatigue. He began to use a wheelchair for distance one year ago which disappointed Ms. D., "I had still been aroused by his walking on crutches. This is selfish and horrible, but I know you'll tell him to use the wheelchair all the time and I won't even have the pleasure of watching him walk anymore."
Insight: Childhood Dream of Disability.
Ms. D. came to the fourth therapy session reporting that she had had a dream in which she was a young girl walking into her elementary school wearing long leg braces and using crutches, "I walked into the school and felt in the dream, 'Yes! This is the real me. This is who I want to be: a disabled child.'"
When asked about the relationship of her dream to her attraction to disabled men and her pretending to be disabled, she cried and began talking about her parents, saying, "I was an accident born 15 years after my brother. He left home when I was 2 and I was raised as an only child." She described her father as "unsatisfied and a demanding tyrant." Her father would nightly scold her mother for the mother's flaws, "My mother would just sit there silently, looking wounded." Ms. D. described herself as "a terribly lonely child," with neither parent displaying emotion or affection, "They basically ignored me. My father worked and my mother kept scrubbing the kitchen floor. They never hugged each other or me or uttered one kind word."
We discussed why the patient wanted to be a disabled child and she recounted an incident when a local child, who had had polio and walked with crutches and leg braces, walked past their home on the way to school, "My father saw the girl as he retrieved the morning paper and said to my mother, 'I saw poor Sally walking to school.' 'Yes,' said my mother, 'Poor Sally' and her eyes filled with tears. I had never seen either one of them show any tender emotion before!"
Ms. D. also remembered a class trip a few years later when she saw another girl who walked with crutches and leg braces, "I just stared at her from a distance, seeing how her classmates carried things for her, how the teacher walked with her behind the rest of the class." After that experience Ms. D. would play in the family garage using croquet mallets as crutches and tying sticks to her legs for braces. She also remembered finding her old baby carriage and pretending it was her wheelchair. The patient concluded, "I wanted to be a disabled child so I would be loved. Pretending to be disabled now that I am an adult - even if I actually became disabled - cannot make up for the love and attention my parents did not give me."
After the dream and the discussion of her childhood, Ms. D.'s interest in pretending she was disabled and even looking for disabled men decreased markedly, "I will get somewhat excited if I see disabled men, but I am no longer compelled follow or go looking for them. Sometimes I have the urge to rent a wheelchair when I'm on a trip, but there's no point to it any longer?"
Ms. D. is no longer aroused by fantasies of disabled men and has stopped masturbating using such fantasies. She has for the first time begun fantasizing about and even achieves orgasm thinking about having sex or intercourse with non-disabled men. Ms. D. also has begun to enjoy sex with her husband, "My husband is a good man and I do love him. I am ashamed that I used him, that I married him under false pretenses. But I want our relationship to work."
Ms. D. discontinued psychotherapy just before her husband was about to begin treatment with the Post-Polio Service so that, "he will not discover my secret."
Psychology of DPW's
A variety of explanations have been offered for DPW's attractions, desires and behaviors. A preference for a disabled or disfigured, and therefore less threatening, more attainable or more easily dominated, 'love object' is a commonly-heard explanation for attraction to disabled persons (3,7) However, this explanation for preferring a disabled partner explains neither DPW's obsessive and compulsive attraction to disabled persons nor the powerful desire to appear or to become disabled. Ms. D. had had a number of relationships with non-disabled men and did not marry her husband out of a fear of abandonment, i.e., that a disabled husband would 'not be able to run away from her.'
Another explanation for devotees' attraction is the association in childhood of a disability-related stimulus, e.g., an amputee's stump or leg braces, with a powerful emotional state. Money suggested that one apotemnophile's childhood fear of amputation may have been replaced by the erotitization of the stump, transforming a terror into a joy. (21) A more intuitively appealing mechanism would be the pairing in childhood of a disability-related stimulus with sexual arousal. For example, one plaster cast devotee had his first sexual experience with a girl who was wearing a leg cast. (1). However, only 19% of respondents to the AMPIX survey related their interest in amputees to any kind of direct contact with a disabled person, and the overwhelming majority of devotees have reported their interest in disabled persons began long before puberty. (3,18) Ms. D.'s interest also predated puberty and she had had no childhood fear of amputation or disability.
Attraction to disabled persons has also been related to homosexuality, sadism and bondage. (10) An amputee's stump has been suggested to resemble a penis, therefore providing a less threatening sexual stimulus for male "latent homosexuals" and a counterphobic protection against the fear of castration. (10) A stump's similarity to a penis has also raised the possibility that a desire for amputation is a "counterphobic" antidote for male acrotomophiles' fear of castration, although such fears have not been documented. (7,10,16) However, recent surveys find no increased prevalence of homosexuality, sadism or interest in bondage among acrotomophiles. (3,18) Any similarity between a stump and one's own penis would have little personal meaning for Ms. D., not only because she is a woman but also because she was primarily attracted to men with braces and crutches and was herself interested in pretending to be a wheelchair user. Further, Ms. D. was exclusively heterosexual and had no interest in sadism or bondage.
Several case studies indicate that there may be a higher incidence of transvestites and transsexuals among DPW's. (3,10,13,14,22,23) However, the notion that an apotemnophile is a "disabled person trapped in a nondisabled body" is difficult to justify, there being no 'naturally-occurring' state of disability that would correspond to the the two naturally-occurring genders. Ms. D. was neither a transvestite nor uncomfortable with her gender.
Riddle (24) suggested that DPW's desires develop from a combination of a strict anti-sexual attitude in the child's household, deprivation of maternal love and parental rejection in early childhood that creates a fear for survival and a self-generated fantasy for security:
Ms. D.'s case supports several elements of Riddle's model. Ms. D. did feel a deprivation of love and emotional rejection from both parents. The lack of overt affection between her parents, in addition to the notion that her birth was an accident her parents regretted, do suggest an anti-sexual attitude. Most importantly, Ms. D. remembered a specific triggering event: seeing her unemotional parents express caring and strong positive emotion - the only such expression in her memory - in response to a disabled child. One can imagine the patient concluding in that moment that having a disability was a requirement for being loved. Other descriptions of DPW's note the association of having a disability with parental love and attention (7,13,14) as do DPW's themselves:
ATTENTION. One simple word. Why do I want attention? Is there a way for me to get that desired attention other than using my wheelchair, or becoming paraplegic? As a child, I felt that my parents weren't giving me the kind of attention I wanted. There were a lot of people with disabilities [where we lived]. I guess that the attention my parents were giving the disabled people was more desirable in my child's eyes than the way I felt I was treated. I thought that if I were disabled I would finally get the craved attention from my parents. All the rest, all the desires I have now, the want for braces, the desire to use the [wheel]chair, the urge to become disabled, all that stems from then. (25)
In contrast to Riddle's model, there is no evidence that Ms. D. had a need for self-destruction that was fulfilled by having a disability. It is also unlikely that Ms. D. dated disabled males because she felt that only someone who had a disability could be "lovable." Her behavior suggests not love for her disabled boyfriends but a compulsive desire to be with them. She dated several men with whom she was not in love - men whom she did not even particularly like - so that she could be with them in public. Ms. D.'s interest seems to have been not sexual gratification but receiving by association the love she believed would be lavished on her disabled boyfriends. This conclusion is supported by self-reports of DPW's who compulsively follow disabled people, not necessarily to have a sexual encounter, but to watch, be with or talk to them:
I have a great deal of admiration for those with...disabilities, and I often find myself desperately wishing I could somehow get to know that special person. [W]hen I encounter a disabled person [I] find myself wanting to somehow let them know that I am on their side. (Italics mine.) (25)
[W]henever I see a one-legged girl, I follow her through a street and get feelings of exhilaration, although there is no erection or ejaculation. (13)
I will admit I like to look at a woman in a wheelchair FAR more than a man [in a wheelchair] but it is in no way sexual for me, I'm 100% straight. I want to BE that girl. (26)
Besides receiving love by association, DPW's hunger for and fascination with the details of daily living with a disability may be a vicarious way to experience having a disability. (2,3,25) In addition, devotees may attempt to fulfill their own unmet needs for love and attention by projecting them onto persons with disabilities. Devotees are renowned for being excessively solicitous of and helpful toward disabled people. (2,3) One amputee remarked that all the devotees she has met are, "so nice, so attentive and understanding [and] helpful;" of one devotee she said, "The more he does for me the better it is for him." (2) Note Ms. D.'s sexual arousal while helping her husband at work and her sadness and loneliness when seeing a non-disabled woman with a disabled man, a circumstance in which she is neither being cared for as, nor caring for, a disabled person.
Devotees' intense interest in attending to the needs of disabled persons is reminiscent of patients who become disabled by chronic back pain. Both devotees and chronic pain patients are said to have an "extremely high overachievement tendency." (3,16,18,21,27) Overachieving chronic pain patients provide for the needs of others "in a slave-like manner" until a minor injury provides a "rational and socially acceptable" reason for ceasing overachieving and care taking, becoming dependent on others and thereby having their own needs for love and attention met. (28-30)
There is evidence of devotees' desire to stop overachieving and be taken care of:
We, males also, have some feminine need; for a change [we should not] have to play the macho game all the time. (31)
This quote from a devotee/wannabe is of special interest given Nattress' finding of a "less macho" persona in devotees and that the overwhelming majority of DPW's are male.
That a similar mechanism is operating in pretenders and wannabes is suggested by the finding that the majority of acrotomophiles are also pretenders (61%) and wannabes (51%), whose childhood experiences may have rendered them unable to meet their own needs and caused them to conclude that disability is the only socially acceptable reason - even the only possible reason - for one to be worthy of love and attention (3,18):
My first really clear memory of wanting to be in a wheelchair was when I was about twelve. I was watching TV with my family, and saw this girl, about my age, on some telethon or fund raiser. She was in a pretty little pink checkered dress, pigtails, just the most adorable thing, and she was in this child-sized wheelchair, her legs in little-girl style white leggings and braces. I don't know why, but I remembered how much I wanted to BE that girl. The attention she was getting, being on TV, being the object [of] the worlds best wishes and prayers. (26)
Note Ms. D.'s desire to be watched pushing her wheelchair and lifting her "paralyzed legs," as well as her arousal when the hotel staff was "so kind and thoughtful" when she arrived using a wheelchair.
Finally, the use of projection by devotees is supported by the finding that only 13% of acrotomophiles have had a long-term relationship with an amputee. (3,18) This statistic is reflected in Riddle's (32) statement, "No amputee is the right amputee," a reference to acrotomophiles obsessive but typically unsuccessful search for the 'amputee of his dreams.' (1) Acrotomophiles describe having had many encounters with amputees - some sexual, some casual - not infrequently preferring "the amputee in his head to a real woman." (1,2,18) An actual relationship would cause the disabled individual to become a 'real person,' making projection of the DPW's own needs difficult or even impossible, and eliminating this indirect means for experiencing love and attention. Such a failure of projection is supported by Ms. D.'s almost immediate loss of arousal during sexual encounters with disabled men, but her ability to sustain arousal and even the ability to achieve orgasm using fantasies and imagery that included the same disabled men.
DPW's and Factitious Disability.
Ms. D.'s self-report suggests that deprivation of parental love, coupled with seeing her parents' positive emotional response to a disabled child, set the stage for her attraction to disabled men and her pretending to be disabled. Fortunately, Ms. D. was able to acknowledge the lack of parental love and link it to her desire to 'be disabled' and therefore lovable, an insight that markedly diminished both her attraction to disabled men and her own desire to pretend to be disabled.
However, the realization of the absence of parental love, even in adulthood, can be so painful as to be intolerable. In the most extreme case, such emotional pain could make impossible the recognition of the absence of parental love and even prevent the conscious awareness of an interest in disability. This circumstance would set the stage not for creation of a DPW, but for the more familiar Factitious Disorder [DSM-IV 300.19] presenting as a physical disability as is seen in the following case.
Case 2: Wannabe Unaware
Ms. W., a 45 year old white female, presented for evaluation by the Post-Polio Service complaining of arm and leg weakness, moderate to severe daily fatigue, disturbed sleep, decreased balance and falling. She had an equivocal history of childhood polio, her mother saying that she had been lethargic for three to four weeks when she was about a year old. Ms. W. stated that she had to wear "special shoes" until she was seven, that she fell frequently during childhood and that she continued to fall into adulthood. At age 21, Ms. W. had hip surgery "to stop my falling" but could not describe what procedure had been performed. At ages 32 and 37 she underwent surgeries to repair right, and then left, rotator cuffs. At age 38 she underwent surgery for right lateral epicondylitis after which she had minimal improvement of symptoms.
Ms. W. underwent a nephrectomy at age 32 necessitated by an arterio-venous malformation. She became depressed following the surgery and attempted suicide with prescription medication at age 35 "because of the surgery, an abusive boss and lack of family support." Notably, the suicide attempt followed a neurological evaluation for her muscle weakness, during which the neurologist said her leg weakness might have been "emotional." Her evaluation for leg weakness at age 35 was at variance with her initial report of leg weakness onset at age 39. When asked about the discrepancy in the dates and the reason for her suicide attempt she responded loudly, "If you say my problems are all in my mind I'll go home and kill myself." Ms. W. had been out of work and on disability since age 41 because of "muscle weakness and tiredness." She reported a second suicide attempt at age 43 because of "quality of life issues."
At age 41 she was given a solid knee cage brace for anterior knee pain. The next year a plastic ankle foot orthosis was attached to treat "instability." Because of discomfort, she rarely wore this orthosis. Ms. W. reported that her muscle weakness has become most severe over the past 18 months. She began using axillary crutches 6 weeks before, and purchased Lofstrand crutches 2 weeks before her PPS evaluation on May 3. She started wearing the orthosis a few days before the evaluation.
Evaluation and Therapy.
Ms. W. presented with a slow and labored gait using the crutches, putting little weight on and dragging her right leg. Her manual muscle test [MMT] grades on the right were 2/5 in the hip, 3/5 in the quadriceps and 2/5 in the hamstrings; MMT on the left was 4/5 in the hip and 4/5 in the quadriceps and hamstrings.
She presented for her first physical therapy session on June 10. She arrived in a wheelchair that she obtained the day after her PPS evaluation 5 weeks earlier. All muscles in her upper extremities tested 5/5. MMT on the right was trace in the hip, 0/5 in the quadriceps, trace in the hamstrings and 0/5 for foot dorsiflexion; MMT on the left was 2/5 in the hip, 3/5 in the quadriceps and 2/5 in the hamstrings.
On June 10, Ms. W. related a dream in psychotherapy in which she was able to ice skate, but said, "I know the truth about my life. I know what my legs can't do." On June 12 she called, extremely agitated and crying, after a conversation with the Post-Polio Service physiatrist whom she said, "Asked me if I would ever walk on my own again, as if I should know!" On June 24 she related being "forced" by her mother to have her tonsils removed and stated that she needed to be "validated" by her mother.
On July 1, Ms. W. was admitted to an inpatient psychiatric unit after having a psychotic episode. She was reported to have run down the stairs of her house and down the front walk to greet two of her friends, talking about how she and her doctor were "God." It was discovered in the hospital that the patient had been taking a prescribed narcotic that she had not mentioned to the PPS treatment team. It was also discovered that her two rotator cuff surgeries had been deemed unnecessary by her orthopedic surgeon but performed because of Ms. W.'s constant complaints of pain.
The patient's psychosis cleared and she was discharged on July 2. She said, "My doctor friend tells me I walked at home and in the hospital." Ms. W. did not believe that she had been able to walk and stated, "The doctor just doesn't believe in PPS." She also said, "I don't have to be in the rat race anymore because of my PPS." She admitted to feeling lonely, saying, "I wish I were a child."
On July 15, Ms. W. returned to physical therapy and stood unsteadily without her brace in the parallel bars. She appeared to be tightly holding her right knee slightly flexed and foot plantar flexed. This positioning of the leg made clearing her foot difficult and required the use of her hip flexors to advance her leg, which she was able to do in a jerky fashion in spite of the hip flexors being measured as trace.
On July 30, Ms. W.'s husband reported that she had again been admitted to an inpatient psychiatric unit, presenting with agitation, loose associations and "her head full of thoughts." She was diagnosed as having a manic episode and was discharged on lithium, tegretol and respiridone. The patient's husband stated that Ms. W. was again able to walk at home and in the hospital when she was psychotic, although she still did not believe it.
Her husband also said that he had been thinking about why his wife was unable to walk when she was not psychotic:
I just remembered something my wife said when we first met. She said that she had always wanted to have a 'little disability' that would not limit her, like wearing braces on both legs, but only up to her calves. She thought that her mother and people in general would have treated her more kindly if she had been a disabled child.
Ms. W. did not return for treatment with the PPS Service but called in five months later, saying that she had just received SSDI and that she wanted a prescription for a power wheelchair so that she could visit Disney World. She was asked to collect her medical and psychiatric records and an appointment would be made. She did not call again.
Factitious Disability Disorders
Ms. W.'s childhood desire to have a 'little disability' she thought would have allowed her to be "treated more kindly," and her subsequent development of a Factitious Disorder, suggest that those with factitious physical disabilities can be combined with devotees, pretenders and wannabes to create a diagnostic grouping that could be called Factitious Disability Disorders (FDD). FDD's would be conditions in which disability - real or pretended, ones own or that of another - provides an opportunity to be loved and attended to where no such opportunity has otherwise existed. Money (16) states that apotemnophilia may "share something in common [with] Munchausen's syndrome." Yet, he distinguishes between the Munchausen's patient, who "is obsessed with self-inducing symptoms repetitively for the sake of being a patient," and the apotemnophile who is supposedly satisfied with 'just one' amputation. However, the operative phrase for both conditions is "for the sake of being a patient," i.e., to receive the care and attention that would otherwise not be obtainable. Apotemnophiles need only one (albeit extreme) medical intervention that leaves them with an indelible and obvious stigma of disability that they believe will permanently satisfy their need for love and attention. (14)
If the common psychologic foundation of these conditions is that disability will satisfy unmet needs for love and attention, then there are only two factors that differentiate between devotees, pretenders, wannabes and those with a factitious physical disability: the awareness of a desire to appear or actually become disabled and physically appearing to be disabled.
Awareness of the desire to be disabled is present in the wannabe and pretender, can be absent in the devotee and is definitely absent in the patient with a factitious disability. The appearance of disability is absent in the devotee, the non-disabled wannabe and the pretender between binges of appearing to be disabled, but present in the wannabe who successfully becomes disabled, a person with a factitious disability and in the pretender while using assistive devices.
The two factors of FDD's suggests possible treatment strategies. As Case 1 indicates, patients must first develop awareness, acknowledging the pain of not receiving the parental love and attention they desired. They must then discover that disability became a means to an end, the end being making themselves worthy of love and attention. Psychotherapeutically, pre-planned thought stopping, substitution of appropriate behaviors and introspection may help to stop disability-related obsessions and compulsions that distract from acknowledging the painful absence of parental love and may assist in identifying and meeting the individual's own needs for love and attention.
For over a century, the principle focus of the literature on DPW's has been sexual. Although this focus has caused the apparent psychologic similarities among DPW's and those with factitious disability to be overlooked, the issue of relationships between devotees and disabled persons is of great importance. Nattress (3) stated that attraction to disabled persons is only in "relatively few [acrotomophilies] a dysfunctional condition that should be treated" and that "the interest in female amputees should be considered a quality that is useful in drawing men and women together." Riddle (24) stated that disabled women "should take advantage of what is being offered to them." While it is both odious and unsupportable to imply that people with disabilities will be desirable only to those with a paraphilic attraction, there is evidence that devotee's unique attraction is not particularly useful in bringing - and more importantly keeping - couples together. Despite their obsessive interest, only a small minority (21%) of acrotomophilies have had long-term relationships with amputees (3,18) A majority of devotees attending a yearly 'dating weekend' with amputees are reported to be already married to someone who is not disabled, "more interested in sex and [the] stump than a relationship," or exclusively involved with 'the amputee in their heads.' (2) Any relationship based on or even initiated as a result of projected desires for love and attention - what Stoller (33) described as "an attempt to cure the effects of [childhood] traumas, frustrations, conflicts, and other painful conditions" - does not bode well for reciprocity or longevity.
An additional concern is that devotees, who very infrequently admit their attraction to disability, are known to volunteer or work where contact with disabled persons is assured, e.g., as prosthetists, orthotists and possibly as personal care assistants. (3,19,34) The potential for harm to disabled persons inherent in such situations is obvious.
Riddle's conclusion - that "part of the answer is that [DPW's] need to learn how to love themselves" - contains both the essence of the problem and its potential solution. (24)
Richard L. Bruno, Ph.D.
The Post-Polio Institute
Englewood Hospital and Medical Center
Englewood, New Jersey 07631
United States Of America
phone : 1.201.894.3724
e.mail : email@example.com
AcknowledgementsThe author gratefully acknowledges the use of information from evaluations performed by Dr. Jerald. Zimmerman and Michelle Beltram, P.T., the extensive editing by and conceptual discussions with Drs. Nancy Frick and Jesse Kaysen and the efforts and expertise of Mary Ann Solimine, R.N., M.L.S., with out whom this work would not have been possible.
Notes and references
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