Vous êtes sur la page 1sur 4

Epilepsia, 48(5):10071010, 2007

Blackwell Publishing, Inc.



C 2007 International League Against Epilepsy

Women with Onset of Epilepsy Prior to Marriage:


Disclose or Conceal?
Deetha Santosh, T. Santosh Kumar, P. Sankara Sarma, and Kurupath Radhakrishnan
R. Madhavan Nayar Center for Comprehensive Epilepsy Care, Sree Chitra Tirunal Institute for
Medical Sciences and Technology, Trivandrum, Kerala, India

Summary: We inquired reasons for concealment/disclosure of


the history of epilepsy during marriage negotiations and marriage outcomes of 82 consecutive women attending a tertiary
referral center based epilepsy clinic in Kerala, southern India.
At the time of marriage, 55% concealed and 45% disclosed
the history of epilepsy. Majority of those who concealed admitted that they did so fearing breakup of marriage negotiations, and majority of those who disclosed did so to forestall

the consequences after marriage of concealing. Compared to


those who disclosed, the prevalence of divorce, separation and
disturbed marriages were significantly higher among those who
concealed. Honest prospective communication during marriage
negotiations about epilepsy is important for preserving subsequent married life. Key Words: ConcealmentDisclosure
EpilepsyIndiaMarriage.

The psychosocial consequences of the stigma potentials


of epilepsy are nowhere more evident than in the case of
women with epilepsy of the marriageable age in a developing country. Unlike in western culture, in most Asian
countries, it is the responsibility of the parents to find a
suitable match for their daughter and arrange her marriage (Huang, 2005). Parents of a woman with epilepsy
often get her married, without informing the spouse and
family of the disease (Kleinman et al., 1995; Agarwal
et al., 2006). Seizure exacerbation often occurs soon after
marriage due to noncompliance to medication. Divorce
ensues when the presence of epilepsy becomes evident
(Kleinman et al., 1995; Wada et al., 2004; Agarwal et al.,
2006).
In India, and perhaps in other developing countries too,
one of the most frequently asked questions by the parents
of a woman of marriageable age during medical consultation is whether they should reveal or conceal the history of epilepsy during marriage negotiations. Some of
them would mention that the disclosures had resulted in

several broken negotiations. Despite its enormous medical and social implications, little information is available
to guide the clinician to answer this question. Through
a questionnaire survey, we investigated the prevalence of
concealment/disclosure of the history of epilepsy and its
consequences on the married life of women with epilepsy
in Kerala, southern India.

SUBJECTS AND METHODS


We recruited 82 consecutive married women attending the epilepsy clinic of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum,
Kerala, who had active epilepsy for 5 years or more prior
to and after marriage. We excluded patients with concomitant physical handicap, intellectual impairment, psychiatric disturbances, or pseudoseizures. We defined active
epilepsy if the woman had at least two epileptic seizures
per year during the previous 10 years, regardless of the
antiepileptic drug treatment status. The survey questionnaire inquired demographic and clinical features and contained 10 close-ended questions related to the subject of
this study (Table 1). We used mean, median, standard
deviation, and percentages to summarize the data. The
t-test and chi-square test were used to evaluate the statistical significance of the differentials in the survey responses.
A p-value of <0.05 was considered significant.

Accepted December 21, 2006.


Address correspondence and reprint requests to Dr. K. Radhakrishnan,
Professor and Head, Department of Neurology, Sree Chitra Tirunal Institute for Medical Sciences and technology, Trivandrum 695011, Kerala,
India. Email: krk@sctimst.ac.in or krk@md3.vsnl.net.in
doi: 10.1111/j.1528-1167.2007.01040.x

1007

1008

D. SANTOSH ET AL.
TABLE 1. The questionnaire

Does your husband know that you have epilepsy? (yes/no)


Prior to marriage, did you inform your husband or his family that you
have epilepsy? (yes/no)
If you have informed prior to marriage, whom did you inform (tick one)
Husband only
Husbands parents/relatives only
Husband and parents/relatives
If you have informed prior to marriage, why did you do so? (tick one)
Anticipated consequences after marriage of concealing
Wish to marry only if I am accepted with the knowledge that
I have epilepsy
Compulsion from friends/relatives
If you have not informed prior to marriage, why did you do so? (tick
one)
Anticipating breakdown of marriage negotiations
Did not consider that epilepsy is a disease that needs to be disclosed
Thought that I will be cured of epilepsy after marriage
If you have not informed prior to marriage, how did your husband
come to know about your epilepsy after marriage? (tick one)
Witnessed seizure
Compelled to disclose
Informed by others
By disclosing epilepsy, how many prior marriage negotiations did
break down? (yes/no)
How did epilepsy affect your married life? (tick one)
Legally divorced
Separated
Disturbed
Satisfied
What would you advise women with epilepsy who wish to marry? (tick
one)
Do not disclose your epilepsy prior to marriage
Disclose to spouse and parents during marriage negotiations
Disclose to husband only after marriage
Leave to destiny
In your opinion, does our society especially discriminate women of
marriageable age with epilepsy? (yes/no)

TABLE 2. Demographic and clinical characteristics of 82


women with epilepsy
Attributes

Year SD (range)

Age (years)
Age at epilepsy onset (years)
Duration of epilepsy (years)
Duration after marriage (years)

34.6 9.3 (2259)


14.7 4.6 (122)
19.7 9.2 (542)
11.3 7.2 (535)
N (%)

Religion
Hindu
Muslim
Christian
Education
Lower school
High school
College
Professional
Occupation
Housework only
Employed
Type of marriage
Arranged by parents/relatives
Love marriage
Knowledge about spouse prior to marriage
Unknown
Relative
Neighbor
Type of living family
Nuclear
Mixed
Predominant seizure type
Complex partial seizure
Generalized seizures
Epilepsy syndromic diagnosis
Temporal lobe epilepsy
Juvenile myoclonic epilepsy
Other/uncertain

53 (64.6)
17 (20.7)
12 (14.6)
2 (2.4)
43 (52.4)
33 (40.2)
4 (4.9)
60 (73.2)
22 (26.8)
67 (81.7)
15 (18.3)
41 (50.0)
23 (28.0)
18 (22.0)
17 (20.7)
65 (79.3)
52 (63.4)
30 (36.6)
42 (51.2)
8 (9.8)
32 (39.0)

N, number of patients; SD, standard deviation.

RESULTS
The demographic and clinical characteristics of 82 married women with epilepsy are provided in Table 2. Their
age ranged from 2259 years, and duration of marriage
ranged from 535 years. Eighty-two percent of the marriages were arranged by parents. Fifty percent of our patients had never met the spouse before marriage. Nearly
all of them have had at least 10 years of school education,
and over one-third had been to college. Twenty-seven percent of them were employed. The distribution according
to religion was 64.6% Hindu, 20.7% Muslim, and 14.6%
Christian. Fifty-two (63.4%) patients had complex partial
seizures, remainder had generalized tonicclonic seizures.
A diagnosis of temporal lobe epilepsy and juvenile myoclonic epilepsy was evident in 42 and eight patients,
respectively.
Prevalence of concealment/disclosure
At the time of marriage, 45 (54.9%) concealed and 37
(45.1%) disclosed the history of epilepsy. Out of the patients who disclosed, 20 (54.1%) informed the spouse

Epilepsia, Vol. 48, No. 5, 2007

as well as his parents, 15 (40.5%) only the spouse, and


two (5.4%) only to parents of the spouse. At the time
of interview, out of the patients who concealed, the history of epilepsy became known to husband and in-laws in
32 (71.1%) and only to husband in six (13.3%) patients.
Seven patients managed to hide their epilepsy even after
being on marriage for a period of 6 to 13 years. In twothirds of those who concealed, the presence of epilepsy
became evident to husband and family when they witnessed a seizure. The rates of concealment/disclosure did
not differ between those who were married 20 years ago
compared to those married during last one decade ( 2 =
2.41, degree of freedom [df] 2, p = 0.299).
Reasons for concealment/disclosure
Thirty-two out of 45 patients admitted that they concealed epilepsy fearing breakup of marriage negotiations.
Twelve of them felt that epilepsy is not a disease that
merits disclosure. One patient felt that marriage might
cure her epilepsy. Out of 37 patients who disclosed, 29

EPILEPSY AND MARRIAGE


TABLE 3. Comparison of the attributes between patients who
concealed and disclosed epilepsy

Attributes
Age at marriage
Age at epilepsy onset
Education
School
College
Religion
Hindu
Muslim
Christian
Employment
Employed
Unemployed
Seizure frequency
5 per year
6 per year
Type of marriage
Arranged
Love
No. of prior broken
marriage negotiations
Marriage outcomes
Divorced
Separated
Disturbed
Satisfied

Concealed
N = 45
Mean SD

Disclosed
N = 37
Mean SD

Significance
(p)

23.0 3.7
15.0 4.4
N (%)

23.6 4.0
14.2 4.7
N (%)

NS
NS

26 (57.8)
19 (42.2)

19 (51.4)
18 (48.6)

NS

30 (66.7)
9 (20.0)
6 (13.3)

23 (62.2)
8 (21.6)
6 (16.2)

6 (13.3)
39 (86.7)

16 (43.2)
21 (56.8)

0.002

32 (71.1)
13 (28.9)

27 (73.0)
10 (27.0)

NS

38 (84.4)
7 (15.6)
06

29 (78.4)
8 (21.6)
28

NS

8 (17.7)
9 (20.0)
20 (44.4)
8 (17.8)

1 (2.7)
1 (2.7)
6 (16.2)
29 (78.4)

1009

Patients advice to unmarried women with epilepsy


Based on their experience, 40 (48.8%) of our patients
would recommend to women with epilepsy aspiring to get
married to disclose to spouse and his family prior to marriage. While three-fourths of women who disclosed would
encourage others to do so, only one-fourth of women who
concealed would encourage other women to disclose history of epilepsy during marriage negotiations (Table 3).
DISCUSSION

NS

NS
<0.001
<0.001
<0.001
<0.001

N, number of patients; SD, standard deviation; NS, not significant.

did so to forestall the consequences of concealing after


marriage, and eight were prepared to marry only men
who would accept them even after knowing that they had
epilepsy.
Attributes of concealed versus disclosed patients
Table 3 compares the attributes of concealed and disclosed patients. Significantly more patients who disclosed
were employed compared to those who concealed (43.2%
vs. 13.3%, chi-square = 9.25, df = 1, p = 0.002). The
age at marriage, duration of epilepsy, seizure burden, educational status, religion, and the number of failed marriage negotiations did not differ significantly between the
groups of patients who concealed or disclosed. Eightyeight percent of our patients believed that the society discriminated unmarried women with epilepsy.
Consequences of concealment/disclosure
The marriage outcomes of the concealed and revealed
groups of patients are compared in Table 3. Compared
to 29 of 37 disclosed women, only eight of 45 women
who concealed rated their married life as satisfactory
( 2 = 30.11, df = 1, p < 0.0001). Divorce, separation,
and disturbed married life were significantly higher among
those who concealed. The time of marriage did not influence the outcome.

In order to make sure of the influence of epilepsy on


the patients life before and after marriage, we recruited
women who had active epilepsy for duration of at least
5 years prior to and after marriage. Nearly 90% of the marriages were arranged, which is consistent with the local
practice (Department of Health, Government of Kerala,
2004). Fifty-five percent of our patients concealed the
history of epilepsy, majority of them fearing breakup of
marriage negotiations. Significantly higher proportion of
women who concealed had an unhappy married life compared to those who disclosed. Compared to a divorce rate
of 1.3% for the local population (National Family Health
Survey, 2001), 18% of those who concealed the history of
epilepsy were legally divorced; an additional 20% were
separated from their spouses.
Studies have shown that the decision to disclose or conceal depends largely on how strongly persons fear of the
anticipated negative consequences of disclosure (Troster,
1997; Jacoby et al., 2005). The more the woman and her
parents view her disease as a stigma, the more they anticipate negative consequences of disclosure, and concealment becomes their coping strategy. Nearly 90% of our
patients expressed that society especially discriminated
women with epilepsy. In a recently conducted populationbased knowledge, attitude, and practice survey in central
Kerala, 39% of the respondents felt that epilepsy is a hindrance to married life (Radhakrishnan et al., 2000). Furthermore, until recently, an Indian law equated epilepsy
with insanity as a ground for divorce (Mani, 1997).
None of the demographic and clinical variables we investigated, except the employment status, distinguished
between the concealed and the disclosed. Employment,
apart from its economic value to the individual, enhances
social acceptance and leads to self-worth. Ones belief
in ones capabilities has been shown to predict positive health-related behaviors in individuals with epilepsy
(Amir et al. 1999; DiIorio et al., 2003).
Till substantial changes in the attitudes toward people
with epilepsy among diverse communities in India (and
other developing regions) become apparent, women of the
marriageable age with epilepsy will be the targets of social stigma and discrimination. When we counsel them
and their parents, based on our results, we tell them Disclosure is risky (because it often results in breakup of
Epilepsia, Vol. 48, No. 5, 2007

1010

D. SANTOSH ET AL.

marriage negotiations), but concealing epilepsy would, in


all probability, have long-tern disastrous consequences on
married life. Therefore, honest prospective communication about epilepsy is important for preserving subsequent
married life. If you permit, we can provide realistic information to the prospective spouse and his family about the
medical and social aspects of epilepsy. Being employed is
important for a woman with epilepsy as it makes her less
dependent on the spouse and family on money matters,
and more confident in making independent decisions.

REFERENCES
Agarwal P, Mehndiratta MM, Antony AR, Kumar N, Dwivedi RN,
Sharma P, Kumar S. (2006) Epilepsy in India: nuptiality behaviour
and fertility. Seizure 15:409415.
Amir M, Roziner I, Knoll A, Neufeld MY. (1999) Self-efficacy and
social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 40:216
224.
Department of Health, Government of Kerala. (2004) A study on gender based violence in Kerala. Sakhi Resource Center for Women,
Trivandrum, Kerala.

Epilepsia, Vol. 48, No. 5, 2007

DiIorio C, Shafer PO, Letz R, Henry T, Scomer DL, Yeager K; the


Project EASE Study Group. (2003) The association of stigma with
self-management and perceptions of health care among adults with
epilepsy. Epilepsy & Behavior 4:259267.
Huang WJ. (2005) An Asian perspective on relationship and marriage
education. Family Process 44:161173.
Jacoby A, Snape D, Baker GA. (2005) Epilepsy and social identity: the
stigma of a chronic neurological disorder. Lancet Neurology 4:171
178.
Kleinman A, Wang W-Z, Li S-C, Cheng X-M, Dai X-Y, Li K-T, Kleiman
J. (1995) The social course of epilepsy: chronic illness as social
experience in interior China. Social Science & Medicine 40:1319
1330.
Mani KS. (1997) Epilepsy: legal discrimination from negative to positive.
Medicine and Law 16:367374.
National Family Health Survey (NFHS 2). (2001) India, 199899,
Kerala. International Institute for Population Sciences, Mumbai,
India.
Radhakrishnan K, Pandian JD, Santosh Kumar T, Thomas SV, Deetha
TD, Sarma PS, D. Jayachandran D, Mohammed E. (2000) Prevalence, knowledge, attitude and practice of Epilepsy in Kerala, South
India. Epilepsia 41:10271035.
Troster H. (1997) Disclose or conceal? Strategies of information management in persons with epilepsy. Epilepsia 38:12271237.
Wada K, Iwasa H, Okada M, Kawata Y, Murakami T, Kamata A, Zhu
T, Kato T, Kaneko S. (2004) Marital status of patients with epilepsy
with special reference to the influence of epileptic seizures on the
patients married life. Epilepsia 45:3336.

Vous aimerez peut-être aussi