LI FE EXPERI ENCES W I TH SYSTEMI C LUPUS ERYTHEMATOSUS AS REPORTED I N
OUTPATI ENTS’ PERSPECTI VE: A CLI NI CAL- QUALI TATI VE STUDY I N BRAZI L
1Gilber t o Dar i Mat t j e2 Egber t o Ribeir o Tur at o3
Mat t j e GD, Turat o ER. Life exper iences w it h Syst em ic Lupus Er yt hem at osus as r epor t ed in out pat ient s’ per spect ive: a clinical- qualit at iv e st udy in Br azil. Rev Lat ino- am Enfer m agem 2006 j ulho- agost o; 14( 4) : 475- 82
This st udy aim ed t o know lupus out pat ient s’ life exper iences, in t er m s of t he m eanings t hey at t r ibut ed t o sev er al phenom ena associat ed t o t he pr ocess of becom ing ill. Sy st em ic Lupus Er y t hem at osus is a chr onic inflam m at or y disease, pr obably caused by a com binat ion of inbor n/ her edit ar y pr edisposit ions and envir onm ent al fact or s, w hich leads t o an abnor m al st im ulat ion of t he im m une sy st em . Lupus life ex per ience is associat ed t o im por t ant psy chosocial adapt at ion m echanism s of affect ed people. This w or k had a clinical- qualit at iv e design and w as per for m ed in t he der m at ology ser v ice of a Br azilian Gener al Hospit al. The m et hod included pur posiv e sam p l e, an d a sem i st r u ct u r ed i n t er v i ew w i t h o p en - en d ed q u est i o n s w as ap p l i ed . Af t er cat eg o r i zi n g t h e int er v iew ees’ discour se, t he discussion em ploy ed psy chody nam ic t heor ies. The pat ient s’ r eact ions included t he at t em pt t o r ebuild t heir r elat ionships w it h t heir ow n st r engt hs. Lupus pat ient s’ fam iliar and int er per sonal conflict s seem t o be associat ed w it h t he idea t hat fam ily and fr iends do not under st and t he nat ur e of t he disease.
DESCRI PTORS: lupus; adapt at ion, psy chological; int er v iew , psy chological; skin and connect iv e t issue diseases; self con cept ; qu alit at iv e r esear ch ; psy ch osom at ic m edicin e; ch r on ic disease
VI VENCI AS CON LUPUS ERI TEMATOSO SI STÉMI CO COMO RELATADAS EN LA PERSPECTI VA
DE PACI ENTES AMBULATORI ALES: UN ESTUDI O CLÍ NI CO- CUALI TATI VO EN BRASI L
Est e est u dio obj et iv ó con ocer v iv en cias de pacien t es am bu lat or iales com lu pu s, en t ér m in os de los significados que at r ibuyer on a var ios fenóm enos asociados al pr oceso de adolecer . Lupus Er it em at oso Sist ém ico es u n a en f er m edad in f lam at or ia cr ón ica y su cau sa es pr obablem en t e u n a com bin ación de pr edisposicion es congénit as/ her edit ar ias y de fact or es am bient ales, que conducen a un est ím ulo anor m al del sist em a inm une. La vivencia del Lupus se asocia a im por t ant es m ecanism os psicosociales de adapt ación. Est e t r abaj o ha t enido diseño clínico- cualit at iv o, r ealizado en un ser v icio de der m at ología de un hospit al gener al br asileño. El m ét odo in clu y ó m u est r a p r op osit al y u n a en t r ev ist a sem id ir ig id a con p r eg u n t as ab ier t as f u e ap licad a. Desp u és d e cat egor izar los discur sos de los ent r ev ist ados, la discusión em pleó t eor ías psicodinám icas. Las r eacciones de los pacient es abar car on la t ent at iva de r econst r uir las r elaciones con sus pr opias fuer zas. Sus conflict os fam iliar es e int er per sonales par ecen ser asociados a la idea de que la fam ilia y am igos no ent ienden la nat ur aleza de la en f er m ed ad .
DESCRI PTORES: lupus er it em at oso sist ém ico; adapt ación psicológica; ent r ev ist a psicológica; enfer m edades de la piel y t ej ido conj unt iv o; aut oim agen; inv est igación cualit at iv a; m edicina psicosom át ica; enfer m edad cr ónica
EXPERI ÊNCI AS DE VI DA COM LUPUS ERI TEMATOSO SI STÊMI CO COMO RELATADAS NA
PERSPECTI VA DE PACI ENTES AMBULATORI AI S NO BRASI L: UM ESTUDO CLÍ NI CO-QUALI TATI VO
Est e est u d o ob j et iv ou con h ecer v iv ên cias d e p acien t es am b u lat or iais com lú p u s, n os t er m os d os sign if icados qu e at r ibu íam aos v ár ios f en ôm en os associados ao pr ocesso de adoecer . O Lú pu s Er it em at oso Sist êm ico é um a doença inflam at ór ia cr ônica e sua causa é pr ov av elm ent e um a com binação de pr edisposições con g ên it as/ h er ed it ár ias e f at or es am b ien t ais, q u e con d u zem a u m est ím u lo an or m al d o sist em a im u n e. A vivência do Lúpus est á associada a im por t ant es m ecanism os de adapt ação psicossocial das pessoas acom et idas. Est e t r abalho t ev e um desenho clínico- qualit at iv o, r ealizado no ser v iço de der m at ologia de um hospit al ger al br asileir o. O m ét odo incluiu am ost r a pr oposit al e foi aplicada um a ent r evist a sem idir igida de per gunt as aber t as. Após cat egor izar as f alas dos en t r ev ist ados, a discu ssão em pr egou t eor ias psicodin âm icas. Con clu iu - se qu e r eações dos pacient es incluíam a t ent at iva de r econst r uir os r elacionam ent os com suas pr ópr ias for ças. Conflit os fam iliar es e int er pessoais dest es pacient es par ecem est ar associados com a idéia de que a fam ília e am igos n ão com pr een dem a n at u r eza da doen ça.
DESCRI TORES: lupus er it em at oso sist êm ico; adapt ação psicológica; ent r ev ist a psicológica; doenças da pele e do t ecido con j u n t iv o; au t o- im agem ; pesqu isa qu alit at iv a; m edicin a psicossom át ica; doen ça cr ôn ica
1
Ar t icle ext ract ed fr om t he m ast er 's t hesis; 2 MSc, Pr ofessor, Univer sit y for t he Developm ent of t he St at e and of t he Region of Pant anal, Resear cher of t he Laborat or y of Clinical- Qualit at ive Resear ch, e- m ail: m at t j e@zaz.com .br ; 3 PhD, Pr ofessor, Facult y of Medical Sciences, Coor dinat or of t he Laborat or y of
Clinical- Qualit at ive Resear ch, e- m ail: er t urat o@uol.com .br. St at e Univer sit y of Cam pinas
I NTRODUCTI ON
The gr eat im it at or ’s clinical aspect s
A
cco r d i n g t o t h e I n t er n a t i o n a l St a t i st i ca l Cl a s s i f i c a t i o n o f D i s e a s e s a n d Re l a t e d H e a l t hPr o b l em s, i n i t s 1 0t h Rev i si o n ( I CD - 1 0 ) , Sy st em i c
Lu p u s Er y t h em at osu s ( SLE) , f r eq u en t ly r ef er r ed t o
sim ply as lupus, w as nosographically conceived w it hin
t h e sy st e m i c co n n e ct i v e t i ssu e d i so r d e r s( 1 ). Th e
Am er ican College of Rheum at ology ( ACR) r em em ber s
t h a t SLE i s ca l l ed t h e g r ea t i m i t a t o r , b eca u se i t s
m a n i f e s t a t i o n s v a r y s o w i d e l y t h a t i t i s o f t e n
er r on eou sly con f ou n ded w it h ot h er disor der s, bein g
an im p or t an t clin ical con d it ion t h at af f ect s sev er al
or gans: sk in, j oint s, k idney s, lungs, ner v ous sy st em ,
an d ot h er s( 2 ). Alt h ou gh Lu pu s can be a f at al h ealt h
pr oblem , n ow aday s, m edicin e br in gs u s bot h bet t er
expect at ions, because sever al t her apeut ic possibilit ies
ar e av ailable, and, t her efor e, bet t er qualit y- of- life for
t h e s e p a t i e n t s . S LE i s d e s c r i b e d a s a c h r o n i c
in f lam m at or y d isease, w h ose clin ical cou r se v ar ies
f r o m m i l d t o se v e r e , w i t h a l t e r n a t i n g p e r i o d s o f
r em ission an d r elapse.
Lu p u s af f ect s t en t im es m or e w om en t h an
m en ( in t h eir t w en t ies an d t h ir t ies an d p ar t icu lar ly
Af r ican - Am er ican s an d Asian s) , it s t r eat m en t v ar ies
accor ding t o t he t ype and sever it y of sym pt om s, and
i t s co m p l e x n a t u r e r e q u i r e s t h e p a t i e n t ’ s a ct i v e
par t icipat ion t o m aint ain a sat isfact or y healt h level( 2). The charact er of lupus is aut oim m une, i. e., t he ow n
im m u n e sy st em at t ack s t h e in div idu als’ ow n t issu es
( loss of self- t oler ance) , r epr esent ing an ast onishm ent
p h e n o m e n o n o f N a t u r e : a p r o d u c t i o n o f “ a u t o
-an t ib od ies” occu r s -an d ot h er im m u n e sy st em cells
j oin t he fight , pr ovoking bot h inflam m at ions ( such as
vasculit is) and deposit ions t hat lead t o t issue dam age.
The cause is pr obably a com binat ion of bot h
in bor n / h er edit ar y pr edisposit ion s an d en v ir on m en t al
fact or s ( biological or phy sical agent s) . Nev er t heless,
ACR m ent ions t hat lat er invest igat ions have suggest ed
t h at t h e af f ect i o n m ay h ap p en d u e t o a d ef ect i n
clear in g t h e old an d d am ag ed cells f r om t h e b od y,
w h ich w ou ld t h en cau se an abn or m al st im u lat ion of
t he im m une syst em . I t is obser ved t hat doct or s should
diagn ose t h e disease t h r ou gh in dicat iv e an am n est ic
dat a, confir m ed by a ser ies of blood t est s. How ever,
unfor t unat ely, due t o t he gr eat var iet y of sy m pt om s
and t heir gr adual dev elopm ent , lupus is har dly ev er
r eco g n i zed . Th er e a r e n o sp eci f i c ep i d em i o l o g i ca l
st udies on lupus in Brazil but , if sim ilar t o frequencies
i n t h e USA, w e sh o u l d h av e b et w een 1 6 . 0 0 0 an d
80.000 lupus cases in our populat ion( 3).
A disease t hat r equir es m ult ipr ofessional car e
B e y o n d b o t h t h e s o - c a l l e d c o n s e r v a t i v e
t r eat m ent and m or e aggr essive t herapy, car e for lupus
pat ien t s m u st also in clu de t h e m an agem en t of t h is
d i s e a s e ’ s b r o a d e r h e a l t h i m p a c t i n t h e a f f e c t e d
p e o p l e ’ s p sy ch o l o g i ca l a n d so ci a l l i f e . Cl i n i ci a n s
t hem selves allude t hat living w it h lupus surely m eans
lear ning t o deal w it h a chr onic disease t hat can lim it
act iv it ies, due t o fat igue and j oint pains, as w ell as
leading w it h depr ession, loss of hope, ir r it abilit y and
anger, due t o a cer t ain unpr edict abilit y of lupus and
an occasional lack of r esponse t o t r eat m ent . Fat igue,
p a r t i cu l a r l y, d o e s n o t se e m t o b e ca u se d b y a n y
r e c o g n i z a b l e f a c t o r o f a n i n f l a m m a t o r y o r
i m m u n o l o g i ca l st a t e, b u t co u l d b e a m u l t i f a cet ed
ph en om en on w h er e sev er al psy ch osocial fact or s ar e
st r on gly r elat ed, in dicat in g t h at f at igu e is par t of a
com plex r esponse t o chr onic disease( 4 ).
Kn ow in g t h e m ean in g s ill p er son s at t r ib u t e
t o s e v e r a l p h e n o m e n a a s s o c i a t e d t o l u p u s i s
indispensable t o phy sicians, nur ses and ot her healt h
pr ofessionals w it h a v iew t o offer ing t r uly efficacious
r ecom m endat ions. I t could be point less t o giv e a set
of m edical orders, advices or w arnings if t he ill people
do n ot place t h e disease in a cen t r al poin t on t h eir
personal value scale. I n t his sense, a qualit at ive st udy
should alw ays pr ecede a global appr oach t o a cer t ain
p at i en t g r o u p . On l y af t er i n t er p r et i n g w h at ev er y
s y m p t o m , m a n i f e s t a t i o n i n g e n e r a l , d i s e a s e
co n se q u e n ce , a n d l i m i t a t i o n i n g e n e r a l r e p r e se n t
sy m b o l i ca l l y a n d e x i st e n t i a l l y t o t h e d e t e r m i n e d
pat ien t pr of ile’s psy ch ological an d sociocu lt u r al lif e,
healt h pr ofessional can be m or e confident about t he
successful out com e of t r eat m ent .
This w ill enable clinicians t o bet t er per suade
pat ient s, for ex am ple, t o m aint ain an act iv e lifest y le
t h at h elp s t o k eep j oin t s f lex ib le an d m ay p r ev en t
car diov ascu lar com plicat ion s, h av in g t h em alt er n at e
lig h t t o m od er at e ex er cises w it h p er iod s of r est or
r elax at ion , in accor dan ce w it h m edical associat ion s’
det er m inat ions( 2). Det ailed at t ent ion m ust also be given
t o how t o discuss t he disease w it h young pat ient s w ho
w ish t o becom e pr egnant , guiding t hem t o w ait for a
less act iv e m om ent in t he disease cour se t o hav e a
Healt h pr ofessionals and pat ient s fr equent ly
hav e differ ent concept ual ev aluat ions about a cer t ain
d isease b ecau se t h ey occu p y d if f er en t sociocu lt u r al
loci in t he clinical set t ing and bring different em ot ional
dem ands. A quant it at ive st udy w it h lupus pat ient s and
phy sicians, about t heir ev ent ual discor dances on t he
assessm ent of lupus disease act iv it y w as per for m ed.
I n t h is case st u dy, t h e disagr eem en t bet w een bot h
gr oups could have been a r esult fr om pat ient s scor ing
t heir disease act ivit y based on t heir psychological and
phy sical w ell- being, w her eas phy sicians scor e of t he
disease’s act iv it y w as based on clinical and phy sical
signs and sym pt om s of lupus( 6). As lupus is a serious
an d m u lt ipr of ession al h ealt h pr oblem , ev er y clin ical
t eam m em ber should use qualit at iv e r esear ch r esult s
t o follow lupus pat ient s.
For in st an ce, sim u lt an eou sly t o t h e r ole of
t h e r h eu m at ologist , w h o assu m es t h e r espon sibilit y
of caring for t hese pat ient s, int er act ing w it h t hem and
t h eir f am ily in or d er t o p r ov id e h ealt h in f or m at ion ,
n u r se s sh o u l d k n o w h o w t o i n t e g r a t e e d u ca t i o n ,
r esear ch, m anagem ent , leader ship, and consult at ion
int o t heir clinical r oles( 2), dem onst r at ing a high lev el
o f i n d e p e n d e n c e a n d c l i n i c a l e x p e r t i s e i n l u p u s
m anagem ent . Mor eov er, t he availabilit y of qualit at iv e
result s can enable clinical psychologist s t o bet t er assist
t he pat ient and fam ily in m anaging em ot ional dist r ess
and facilit at ing t o live w it h such painful, chr onic, and
som et im es disablin g disease( 2 ).
I n t h e sam e w ay, t h e p h y si cal t h er ap i st ’s
f u n ct i o n co u l d a ch i e v e b e t t e r p r o g r e ss, a ssi st i n g
p a t i e n t s i n t h e i r r e co v e r y a n d r e - e n t r y i n t o t h e
com m unit y, hom e, and w or k envir onm ent , w it h a high
level of self- sufficiency( 2), w hen t his professional know s
t h e pr of ou n d psy ch ody n am ic an d cu lt u r al m ean in gs
of lu pu s for pat ien t s. I f t h e occu pat ion al t h er apist ’s
m ission con sist s of im p r ov in g a p at ien t ’s ab ilit y t o
d e v e l o p d a i l y a c t i v i t i e s s a t i s f a c t o r i l y( 2 ), t h i s
p r o f e s s i o n a l s h o u l d n a t u r a l l y e x a m i n e t h e
p sy ch o so ci al r ep r esen t at i o n s o f b ei n g af f ect ed b y
lu p u s. Fin ally, t h e social w or k er ’s r ole sh ou ld of f er
ser v i ces r an g i n g f r o m sev er al k i n d s o f su p p o r t t o
r efer r als t o com m unit y r esour ces, w hich can help t o
en h an ce adapt at ion t o lu pu s con dit ion s, t ak in g in t o
accou n t in f or m at ion ab ou t t h ese p at ien t s’ sy m b olic
under st anding of t heir healt h pr oblem( 7).
I n w h i c h t e r m s w o u l d l u p u s b e a c l a s s i c a l
p sy ch osom at ic d isor d er ?
I n a t r adit ional psy chosom at ic v iew and in a
st r ict sen se, SLE w as con sid er ed a p sy ch osom at ic
disease, t oget her w it h ot her collagen diseases ( such
as ar t hr it is, polyar t er it is, scler oderm a, and r heum at oid
ar t hr it is) . Then, som e st udies debat ed on t he pr obable
influence of em ot ions in t he course of lupus, cogit at ed
because of t he k now n act ion of cat echolam ine in t he
im m u n ologic com plex es( 8 ).
Th e r e n o w n e d B r a z i l i a n p h y s i c i a n a n d
p sy ch oan aly st Ju lio d e Mello Filh o, w h o f r eq u en t ly
discussed t he psy chosom at ic concept ion, par t icular ly
at t em pt ed t o apply t his t o t he global under st anding
o f l u p u s. Acco r d i n g t o st u d i es car r i ed o u t b y t h i s
aut hor, several ov er lapping em ot ional pr oblem s w er e
det ect ed in t r igger m echanism s of lupus cr ises, w it h
a predom inance of so- called sit uat ions or experiences
o f l o ss. Nev er t h el ess, t h ese st u d i es d i d n o t b r i n g
sp e ci f i c a sp e ct s. Th e co n cl u si o n s su g g e st e d t h a t
pr oblem at ic loss w as a t r igger ing agent of t he disease.
I n g en er al , t h i s w o u l d o ccu r d u e t o t h e f o l l o w i n g
fact ors: difficult ies t o t he relat ional w orld of w ho had
suffer ed t he loss; ego’s ov er load r epr esent ed by t he
m ou r n in g p r ocess; d ep r ession ef f ect s t h at m ay b e
inst alled. Thus, sit uat ions of em ot ional im pact could
s e r v e a s t h e t r i g g e r f o r d i s e a s e m a n i f e s t a t i o n .
How ever, t his relat ionship m ust be proven st at ist ically,
w it h t he em ploy m ent of case- cont r ol st udies( 9).
On t he ot her hand, as has been w ell k now n
sin ce Fr an z Alex an d er an d h is con t em p or ar ies, t h e
t e r m p s y c h o s o m a t i c h a s b e e n s u b j e c t t o g r e a t
cr it icism , as it suggest s t he old and undesir able idea
of dichot om y bet w een m ind and body( 10). For t he sake
of clarificat ion, w e have resum ed t his quest ion in t he
f o l l o w i n g p o i n t s( 1 1 ). Fi r st l y, t h i s t e r m e n t a i l s a n
em p h asis on a d ich ot om y . Th e t er m , d u e t o b ein g
com posed by t h e r oot s “ psy ch ” an d “ som a”, car r ies
t h e con n ot at ion of a d iv ision , as if m in d an d b od y
w er e t w o j ux t aposed segm ent s or elem ent s; an idea
t o t he t ast e of t he danger ous Car t esian split and, t hus,
br eaking t he sense of unit t hat is desir ed for Man.
Secon d ly, t h e id ea of m on od ir ect ion alit y is
e m b e d d e d . I t i m p l i e s t h a t t h e p s y c h o s o m a t i c
quest ions w ould consist of pr oblem s “ locat ed” in t he
“ som a”, u n d er t h e i n f l u en ce of or or i g i n at ed f r om
ch ar act er ist ics or ev en t s in Man ’s p sy ch ic sp h er e;
m any people also use t he w or d som at opsychic, w hich
w ould indicat e t he opposit e w ay. How ev er, neit her of
bot h t er m s br ings t he idea of a sim ult aneous global
m anifest at ion in hum an beings. And t hir d, it induces
t o t he concept ion of a t ight individualizat ion. The t er m p sy ch o so m a t i cs o m i t s i m p o r t a n t se m a n t i c n u cl e i ,
w hich express ot her dim ensions of Man, such as social
b o t h b o d y a n d so u l w e r e co n st r u ct s, u n d e r st o o d
in d ep en d en t ly of Man ’s r elat ion sh ip w it h t h e ou t er
w or ld ( ot h er per son s, t h in gs) , w it h w h ich , act u ally,
he/ she liv es in per m anent cont act and ex change.
Fin ally, w e su p p or t t h at p sy ch osom at ics is
b o t h a w o r d – b e f o r e e v e r y t h i n g e l se – a n d h a s
r epr esent ed a gr eat academ ic m ov em ent det er m ined
by hist orical and cult ural fact ors. Act ually, t he so- called
psy chosom at ics hav e m ade r eflect ions and descr ibed
fact s – involving healt h professionals, researchers and
all t he populat ion – const r uct ed by ideas and at t it udes
– w hich at t em pt t o com pr ehend t he Man’s global healt h
problem s – and t hat it is not a m ere scient ific discipline
n o r a b r a n ch o f k n o w l e d g e t h a t w o u l d d e a l w i t h
int r insic explicat ive m echanism s of t he healt h- disease
p r o cess.
I n view of t his pict ure, it becom es difficult t o
suppor t t he under st anding of lupus as a psychosom at ic
ent it y, in t he sense t hat it w as int ended t o give t o a
cer t ain set of diseases, decades ago. A det er m in ed
char act er ist ic per sonalit y of SLE is neit her confir m ed
b y l i t e r a t u r e , n o r b y d a i l y c l i n i c a l o b s e r v a t i o n .
A l e x a n d e r h i m s e l f p o i n t e d o u t t h a t p e r s o n a l i t y
p a t t e r n s “ v a r y t o su ch a d e g r e e a m o n g p a t i e n t s
su f f er in g f r om t h e sam e d isease t h at , at b est , on e
cou ld speak on ly of cer t ain m or e or less sign if ican t
st at ist ical fr equencies ( per haps w it h som e ex cept ion
r egar din g t h e so- called cor on ar y - pr on e per son alit y ) .
The fact t hat except ions ar e so num er ous in t hem selves
indicat es t hat m ost of t hese correlat ions are not t ruly
causal in nat ur e”( 10).
The im per ious need t o sear ch for life adapt at ion
I n a b r o a d s e n s e , h u m a n a d a p t a t i o n
p h en om en a cor r esp on d t o con cep t s t h at p u t u p at
least t w o delim it at ions in t he psy chosocial field. The
sociological dem ar cat ion r efer s t o gr ou p adapt at ion ,
under st ood as t he per son’s capacit y of adapt ing him /
her self t o int er per sonal r elat ionship set t ings. On t he
o t h er h an d , t h e p sy ch o l o g i cal b o u n d ar i es r ef er t o
unconscious m echanism s t hat one seek s int er nally t o
defend t he ego fr om negat ive feelings in a sat isfact or y
way. Act ually, lupus is a biom edical pr oblem involv ed
i n i m m u n o l o g i c s y s t e m d i s o r d e r s t h a t , i n t u r n ,
p r o v o k e s t h e n e e d t o se e k a l l p o ssi b l e t y p e s o f
psy chosocial adapt at ion in it s car r ier.
Bo t h i n cr ea sed d ep r essi v e sy m p t o m s a n d
dist r essed m ood st at e in SLE pat ient s have fr equent ly
been r elat ed t o t he use of disengaging and em ot ional
cop in g st y les( 1 2 ). A q u an t it at iv e st u d y t h at t r ied t o
d e t e r m i n e i f ch a n g e s i n d e p r e ssi v e sy m p t o m s o r
anxiet y lead t o changes in SLE act ivit y obser ved t hat
d ep r ession an d an x iet y scor es accom p an y ch an g es
in pat ien t s’ assessm en t s of t h eir lu pu s act iv it y, bu t
did not find ev idence t o suppor t t he hy pot hesis t hat
psychological dist ress causes increased SLE act ivit y( 13).
A qu an t it at iv e st u dy of per son alit y f eat u r es
bet w een adolescen t s w it h SLE an d a con t r ol gr ou p,
u sin g t h e Ror sch ach t est , d em on st r at ed a g r eat er
difficu lt y bot h in in t er per son al in t er act ion s an d
self-est eem r ef er r i n g t o l u p u s p at i en t s, al t h o u g h t h ey
display ed t he r esour ces t o elabor at e t he affect s and
cope w it h st r essfu l sit u at ion s( 1 4 ). Mor eov er, a cr
oss-sect i o n a l st u d y u sed st r u ct u r ed q u est i o n n a i r es t o
d e t e r m i n e t h e q u a l i t y o f l i f e i n SLE p a t i e n t s a n d
cor r elat e it w it h disease act ivit y. This st udy found dat a
dem onst r at ing t hat physical and psychological qualit
y-o f - l i f e i s m y-o r e i m p a i r ed i n a ct i v e l u p u s, b u t a l sy-o
con clu ded t h at social an d en v ir on m en t al qu alit y of
-life does not correlat e w it h t he disease act ivit y st at us
in lupus pat ient s( 15).
PREMI SE AND OBJECTI VE
We depar t fr om t he hy pot hesis t hat SLE life
ex per ience, due t o being a st r ongly dist ur bing ev ent
for pat ient s’ per sonalit y is funct ionally associat ed t o
t h is af f ect ed p eop le’s m or e im p or t an t p sy ch osocial
adapt at ion m echanism s. Fr om t his idea, t his r esearch
chose t o st udy lupus out pat ient s’ life ex per iences, in
t er m s o f t h e m ean i n g s t h ey at t r i b u t ed t o sev er al
p h e n o m e n a a s s o c i a t e d t o b o t h t h e i r p r o c e s s o f
b e c o m i n g i l l a n d c o m m o n l y u s e d a d a p t a t i o n
m echanism s, in or der t o ident ify and int er pr et t hose
m ean in gs fr om a psy ch ological v iew poin t .
METHODOLOGI CAL ELEMENTS
We c a r r i e d o u t a n o n - e x p e r i m e n t a l a n d
ex plor at or y st u dy. Th e r esear ch design w as clin
ical-q u alit at iv e, in lin e w it h a h u m an ist ic h ealt h m odel,
an d at t em p t ed t o g iv e a scien t if ic in t er p r et at ion t o
t h e m e a n i n g s p r e s e n t e d b y p e r s o n s w h o w e r e
int erview ed at healt h services – t he ill people’s nat ural
set t ing. The delim it at ion of t he subj ect led t he aut hor s
t o i n v e st i g a t e l u p u s p a t i e n t s’ p e r sp e ct i v e o n t h e
p r ob lem , in f u n ct ion of t h e p sy ch olog ical r esou r ces
t hat m ar k t heir biogr aphical lines. This pr eser ved t he
e m i c s t r a t e g y : t h e r e s p e c t f o r t h e n o t i o n o f
“ per spect iv e”, i. e., t h e f acu lt y of seein g all r elevan t
dat a in a m eaningful relat ionship. Dat a w ere collect ed
t h r o u g h sem i d i r ect ed i n t er v i ew s w i t h o p en - en d ed
q u est ion s, a su it ab le m od e t o assu r e t h e in - d ep t h
t r eat m en t of t h e m at t er w it h t h e in t er v iew ees. All
int er v iew s w er e t ape- r ecor ded and lat er t r anscr ibed.
For t h e sak e of adequ at e sam plin g, w e did
n ot aim for st at ist ical r epr esen t at iv en ess in r elat ion
t o t he univ er se of subj ect s affect ed by t his disor der
( a s i n a r a n d o m i ze d st u d y ) . I n st e a d , w e l o o k e d
int ent ionally for pat ient s, w it h a life ex per ience t hat
p r o v i d e s t h e e x p e r t i s e t o r e f o r m u l a t e , d e f l e c t ,
c o m p l e m e n t a n d / o r c l a r i f y t h e p r e m i s e s( 1 6 ). I n
a cco r d a n ce w i t h t h e se m e t h o d o l o g i ca l r u l e s, w e
st udied five per sons dur ing t he fir st sem est er of 1998.
Th is n u m b er cor r esp on d ed t o t h e sat u r at ion p oin t ,
t hat is, t he m om ent at w hich t he sam ple w as closed
becau se discou r se h ad becom e r epet it iv e.
Th e st u died cases cam e fr om an ou t pat ien t
d er m at olog y ser v ice at t h e Gen er al Hosp it al of t h e
Feder al Univ er sit y of Mat o Gr osso do Sul, a st at e in
t h e Cen t r al- West of Br azil. Th e in clu sion cr it er ia f or
pat ient select ion w er e: ( a) diagnosis of SLE, confir m ed
by t h e r espect iv e m edical t eam , k n ow n f or at least
o n e y e a r ; ( b ) cl i n i ca l , e m o t i o n a l a n d i n t e l l e ct u a l
condit ions t o be subm it t ed t o a clinical- psy chological
r e s e a r c h i n t e r v i e w ; a n d ( c ) c o n s e n t f r e e l y t o
p ar t icip at e in t h is r esear ch af t er ex p lan at ion ab ou t
it s pur pose and signing t he r espect ive t er m . Alt hough
p at ien t s’ g en d er, ag e, or ig in , m ar it al st at u s, f am ily
com posit ion, educat ional lev el, socioeconom ic st at us,
and r eligion w er e not consider ed, ev ent ual v ar iat ions
in t hese dat a ar e pr esent ed in t he discussion sect ion
for t he appr opr iat e t r eat m ent of any bias.
I n t e r v i e w s w e r e su b m i t t e d t o q u a l i t a t i v e
con t en t an aly sis, u sin g fr ee float in g r eadin gs of t h e
discourse t o allow t he researchers t o get fam iliar w it h
t he m at er ial. When t he cat egor izat ion t echnique w as
finished, t he fr am ed t opics w er e discussed accor ding
t o a p s y c h o d y n a m i c v i e w , c o m m o n i n H e a l t h
Psychology. I t is know n t hat , in t he qualit at ive analysis
of t he t ex t , t he fr equencies of t he analy sis unit s ( or
ot her for m s of m at hem at ical t r eat m ent ) do not allow
for inferences about it s cat egories. I nduct ive reasoning
is u sed t o con sid er t h e p h en om en a’s id en t if icat ion
a sso ci a t e d t o i n t e r v i e w e e s’ d i sco u r se , g e n e r a t i n g
int er pr et at ions t o be gener alized t o ot her set t ings by
r esear ch u ser s.
RESULTS AND DI SCUSSI ON
Fiv e p at ien t s w er e in t er v iew ed seq u en t ially
– f ou r w om en an d on e m an – w h o r elat ed sev er al
r ecent adver se event as w ell as negat ive r elat ionship
ex p er ien ces in t h eir liv es w h ile t alk in g ab ou t t h eir
i l l n e ss. Th e y r e m e m b e r e d t h e t y p e s o f a f f e ct i v e
c h a n g e s i n t h e r e l a t i o n w i t h p a r e n t a l f i g u r e s ,
em phasizing com plaint s regarding t o conflict s w it h t he
m ot her. They also lam ent ed sit uat ions in w hich t hey
p e r c e i v e d b e i n g r e j e c t e d i n f a m i l i a r a n d s o c i a l
con t ex t s. Par t icu lar im por t an ce w as giv en t o h ealt h
pr ofessionals, w ho w er e consider ed incom pet ent due
t o t he long t im e t o arrive at a diagnosis.
Ev e n t u a l c o r r e l a t i o n s b e t w e e n t h e s e
e x p e r i e n c e s o r l i f e e v e n t s a n d l u p u s j u s t c o u l d
e v i d e n t l y b e e s t a b l i s h e d t h r o u g h t h e u s e o f
quant it at ive m et hodologies, using case- cont r ol st udies
and r andom sam pling. The r epet it ive com plaint s about
t h e i r l i v e s, d u r i n g t h e i n t e r v i e w s, se e m e d t o b e
gener ically link ed t o t he fact of ex per iencing chr onic
diseases w it h such v ar iable m anifest at ions and lit t le
pr edict able pr ogr ess. How ever, w it h t he specific goal
o f d i scu ssi n g t h e m e a n i n g s o f l u p u s, q u a l i t a t i v e
t r eat m ent of t he int er v iew s led t o t he est ablishm ent
of t hr ee pr om inent cat egor ies: hum an ex per ience of
t h e d isease, cou r se of lif e w it h lu p u s an d r elat ion s
w it h t he self- concept .
Hum an ex per ience of t he disease
As usually happens w it h any disease, people
af f ect ed p eop le b y lu p u s lear n t o ob t ain secon d ar y
gains. Taking advant age of collagen disease chr onicit y,
t h e i n t e r v i e w e d i n d i v i d u a l s s h o w e d t h a t t h e y
m anipulat ed sit uat ions in or der t o gain pr ofit s, such
as a dem on st r at ion of in con t est able solidar it y f r om
t heir fam ily cir cle. This life ex per ience t ends t ow ar ds
pr obable nar cissist ic needs, w it h an ov er v aluat ion of
t h em selv es. I n v iew of su ch in t en se p sy ch olog ical
dem ands, it is under st andable t hat pr ofessional car e
is per ceived as not enough t o t r eat t hem or not even
t o heal t hem .
To w a r d t h e d e f i n i t i v e d i a g n o s i s
com m unicat ion, t he pat ient s seem ed t o dem onst r at e
feelings of om nipot ence, in sense of t hinking t hat t hey
w ill not be reached by such illness in despit e of t hey
have alr eady had t he infir m it y’s t r ait s. Not w it hst anding
any pr ognost ic t hat t hey had r eceiv ed, t hey seem ed
I did not give any im por t ance. I w as eight een year s
old. Then I let it go t hr ough ( ...) I cont inued doing t he sam e
t hings t hat as ever ( ...) I t did not m ean a big t r ouble, som et hing
t hat I could not sur pass ( E 3) .
All t he sam ple’s int er v iew ees st at ed, in any
m om ent , t hat t hey w ould over com e t he disease, as a
p sy ch olog ical n eed of av oid in g an y f r ag ilit y ’s self
-per cept ion . Ev en if t h ey h ad con sider ed t h em selv es
as bein g t ow ar d a popu lar ly lit t le k n ow n diagn osis,
t h ey su p p osed r ep r esen t in g som et h in g sev er e d u e
t o a st r ong psychological load pr esent in t he doct or ’s
v oice. Th er efor e, t h ey pu t t h em selv es au t om at ically
t o m easu r e st r en g t h ag ain st t h is “ p ow er f u l t h in g ”,
l o o k i n g f o r p r o o f i n g t h e i r n a r c i s s i s t i c p o w e r t o
t h em sel v es.
I t hink t hat I w ill pass t hr ough it ( t he lupus) . I t hink
t hat it is t im e for m e t o give back t o t he nat ure- m ot her t he house
t hat gr eat ar chit ect had given. I w ill r et ur n t o it w it hout lupus,
w it hout any sign ( E 2) .
At first inst ant s, a new disease for t heir lives
r epr esent s som et hing cloudy, w it hout a r ecognizable
ident it y, and so a phenom enon t o w hich it is not know n
ex act ly w h at im p or t an ce d eg r ee sh ou ld h av e b een
done. I n t he m aj or it y of t im es, it happens due t o t he
fact t hat lupus is a disease t hat , being relat ively rare
in t he populat ion, it s r epr esent at ion does not inhabit
t h e s o c i a l i m a g i n a r y. H o w c a n w e f r a m e t h e
“ st ranger ” ? Tow ar d t his pict ur e, a possibilit y em er ges
f r om a n egligible obj ect iv e beh av ior t o t h e adv ised
car es by doct or s, such as av oiding sun ex posit ion or
using t he m edicines obedient ly.
Non et h eless, f acin g eit h er t h e d isease r eal
cr ises or even t he im por t ant isolat ed sym pt om s, such
ex p er ien ces b ecom e st r on g ly v alor ized , an d so t h e
pat ient s t rend t o assum e a vict im s’ role. I n t his case,
t he suffer ing r egar ding t his disease m ay ser v e as a
punishm ent due t o not having accom plished pr eviously
t h e m ed ical p r escr ip t ion s. Dif f er en t f r om t h e ot h er
so ci a l l y w e l l - k n o w n d i se a se s, l u p u s a l l o w s u n l i k e
f an t asies, sin ce t h ose f r om a pow er f u l con t r ol ov er
event s unt il even over t heir personal life m anagem ent .
The life cour se w it h lupus
A f t e r t h e a p p e a r a n c e o f t h e d i s e a s e ,
r egar din g t o t h ese peoples’ qu ot idian ch an ges, t h ey
h ad t h e n eed t o asser t t h at t h eir p h y sical cap acit y
becam e decr eased, im peding t hem t o keep t he sam e
pr ev iou s lif e r h y t h m an d gen er at in g t h e dist r essin g
con f lict b et w een a w ill of d oin g t h in g s an d t h e it s
im possibilit y due t o t he phy sical lim it at ions.
On t he ot her hand, dur ing t he int er locut ion,
t her e w er e som e m om ent s of spont aneous r efer ence
o f h a v i n g e x p e r i e n ce d , p r e v i o u sl y t o t h e cu r r e n t
i l l n ess, i r r i t a b i l i t y p h a ses a cco m p a n i ed b y k n o w n
sen sat ion of p eop le w h o seem ed alw ay s t o b eh av e
against t hem . Now adays, how ever, t hey per ceive t hat
t hey deal w it h t heir daily pr oblem s w it h calm . I n t he
l i g h t o f h e a l t h p s y c h o l o g y, t h e r e a r e s e v e r a l
p o ssi b i l i t i e s t h a t e l a p se f r o m t h i s si t u a t i o n . I t i s
pr obable t h at , du e t o bot h t h e fact of people bein g
a w a r e a b o u t t h e i r d i se a se a n d a l so t h e d r a m a t i c
m an n er w it h w h ich t h ey ex pr ess t h em selv es, u sin g
h y p e r b o l i c l a n g u a g e , t h e y h a v e o b t a i n e d a n
int er per sonal dealing in w hich ot her people speak t o
t hem w it h polit eness. I t w ould occur in funct ion of t he
easiness w it h w hich t hese pat ient s w ould feel vict im s.
This v icissit ude of t hings m ak es t hem feel im por t ant
co m p e n sa t o r i l y, r e p r e se n t i n g a n e m o t i o n a l g a i n ,
over all for w hom possibly did not have r ew ar ding life
ex p er i en ces.
They also t old t hat t hey st ar t ed t o be seen as
diseased. They usually im agined t hat people had com e
cl o se t o t h e m b e ca u se t h e se o n e s t h o u g h t l u p u s
pat ient s could ev en die soon. Facing t his per cept ion,
t h e i n t e r v i e w e e s d e m o n s t r a t e d , p a r a d o x i c a l l y,
suspicion for cer t ain r eceiv ed at t ent ions.
I n fact , people t r eat ed m e as a sick per son. And t her e
were m any people who t hought I was going t o die. Upon m y soul!
People w ho t r ied som et im es t o please m e because t hey seem ed
t o be convinced of m y deat h.... I n m y view , it is not love ( E 2) .
A l a m e n t i n co m m o n a m o n g i n t e r v i e w e d
p at i en t s r ef er r ed t o co n st an t v i g i l an ce r el at i n g t o
infir m it y ’s em inent cr ises. I n an at t em pt t o k eep t he
d i s e a s e r e m i s s i o n , t h e n e c e s s i t y o f c o n t r o l l i n g
t hem selves becom es a concer n t hat leads t he pat ient s
t o spend a cont inuous m ent al ener gy. This possibilit y
m ak es SLE d i f f er en t f r o m o t h er ch r o n i c d i seases,
w hose m anifest at ions ar e alw ay s ev ident , but at t he
sam e t im e cr uel: alt er nat ingly t heir lives t ur n ar ound
an illness or it s phant asm . On t he ot her hand, exist ing
such asym pt om at ic phases, t he necessar y healt hcar es
t end t o be neglect ed, in a cult ur ally com m on post ur e
o f n o n - p e r s e v e r a n c e f o r s e c o n d a r y p r e v e n t i o n
m e a su r e s. I n t h i s w a y, n o n - a d h e r e n ce p r o b l e m s
e m e r g e : t h e y u s e d t o b o t h d e c e i v e m e d i c a l
prescript ions and t end t o seek t he healt h professionals
on ly in case of gr eat clin ical n ecessit y. So, t h ese ill
per son s can oscillat e bet w een t h e afflict ion an d t h e
car el essn ess:
You know t hat you w ould change, so you m ust sear ch
Wit h lupus em er gence, t he r eceived at t ent ion
fr om bot h fam ily and fr iends w er e r edoubled evident ly,
but it does not discar d t he idea of t hat , at t he bot t om ,
t h er e is n ot a sign if icat iv e solidar y capacit y am on g
people. Alt hough sick persons can dist r ust of people’s
sincer e int ent ion in helping t hem k indly, t hey st ar t ed
t elling about t heir suffer ings t o w hom ever t hey m eet ,
because of t he em ot ional im pact , w hich t his disease
ach iev es. Ver b alizin g ab ou t t h e su f f er in g is n ot an
except ion for lupus pat ient s. At last , it is difficult t hat
t he r eceived suppor t w as enough t o t hem in or der t o
f eel com f or t ed.
( ...) because I also have ver y dolor ous happenings in
m y life. I t hink t hat it w as w hat m ar ked m e m or e, w hen I got
sick. Then, I did not have suppor t ; it lacked m uch suppor t . Ones
did not under st and it and ot her s did not st r ain t o under st and it
for cer t ain ( E 1) .
I n t er m s of t h e af f ect iv it y, t h e in t er v iew ed
per son s per ceiv e t h em selv es as differ ent on es, w it h
som e peculiar feat ur es. They t ell t hat cur r ent ly t hey
ar e sear ch in g f or su blim at ed af f ect iv e r elat ion sh ips,
f r o m a p sy ch o d y n a m i c st a n d p o i n t , w h i ch i s, t h ey
a l l e g e t o w a n t so m e o n e cl o se r t o t h e m , b u t b y
pr efer ence not hav ing a sex ual inv olv em ent pr oper ly.
Th ey pr efer pr ox im it y in t h e for m of fr ien dsh ip an d
underst anding, inst ead of a full conj ugal involvem ent .
On t h e on e h an d, t h is v it al ph en om en on can be or
n ot d ir ect ly r elat ed , in cau sal t er m s, t o a p r ob lem
p r ov ok ed b y a d isease t h at b ot h r est r ict s cor p or al
m ov em en t s an d leads t o a low er in g of self - est eem .
On t h e ot h er h an d , h ow ev er, t h e in h ib it ion or t h e
r educt ion of t he sex ual int er est can be link ed t o t he
ow n f em ale con dit ion s, w h ich occu r com m on ly bot h
in a cer t ain ag e g r ou p an d a in p ar t icu lar cu lt u r al
co n t e x t . So i t w o u l d a p p e a r a s a m e ch a n i sm o f
rat ionalizat ion in order t o t ry t o j ust ify t o t hem selves
a not full sex ualit y :
You want at t ent ion, you want affect ion, you want t o
chat . Then when one com es already direct ly t o search for sex, it
offends, it sorrows, and it hurt s. You know... t his is m y case ( E 2) .
I n social an d p r of ession al lif e, t h is d isease
w a s co n si d e r e d a r e p r e se n t a t i o n o f t h e u n i v e r se
r e st r i ct i o n o f r e l a t i o n sh i p s a n d a ct i v i t i e s, d u e t o
n e ce ssa r y m e d i ca l p r e ca u t i o n s. Lu p u s r e p r e se n t s
som et hing pow erful, because it is not suscept ible t o a
b i g g e r d o m a i n , i t i s n o t l o ca l i za b l e , i t co m e s b y
s u r p r i s e a n d i t c a u s e s d a m a g e . I t s y m b o l i z e s ,
t herefore, bot h t he loss of a self- cont rol ideal, as w ell
as t o f eel n ak ed , w it h ou t d ef en ses t ow ar d an ev il,
w hich has sev er al faces. I n t his way, it is an enem y
again st w h ich it is n ot k n ow n w h at k in d of w eapon
sh o u l d b e u sed . Faci n g t h i s p i ct u r e, t h e r ecl u si o n
r em ain s as t h e last defen se of w h o see h im / h er self
co r n er ed . Th e a m b i g u i t y r ev ea l s t h a t t h er e i s a n
( unhealt hy ) sat isfact ion for hav ing been able t o t ak e
r e f u g e , b u t t h e r e i s a l s o a d e p r e s s i o n a s a
p sy ch olog ical r eact ion t h at seem s t o b e in ex or ab ly
an “ ex it ”.
The r elat ions w it h t he self- concept
I t w a s d e d i ca t e d a ca t e g o r y t o t h e se l f
-concept quest ion because lupus is a disease t hat can
st r on g ly in f lu en ce h ow t h e p at ien t s look , h ow t h ey
feel and how t hey feel about how t hey look( 17). I n t he
pr esent st udy, t he int er v iew ees’ r epor t s coincide w it h
t he lit er at ur e dat a, w hich point som e feat ur es as being
v er y m uch im por t ant for t he indispensable r ebuilt of
t h e i r o w n c o n c e p t o r i m a g e . Pa r t i c u l a r l u p u s
phenom ena, such as erupt ions on t he skin, hair loss,
and bloat ing due t o ant i- inflam m at or y t r eat m ent s lead
t o t h e m en t al r ep r esen t at ion ’s u n av oid ab le ch an g e
r egar d t o t heir body. New im ages t hat r eflect t he lupus
p a t i e n t s i n t h e m i r r o r, d a y - t o - d a y, c a n b e
u n ap p easab l e.
How ev er, in a lar ge sense, t he cor por al
self-im age is on ly a par t of t h e global self- con cept t h at
m a r k s a n i n d i v i d u a l . A c c o r d i n g t o t h e c l i n i c a l
ex p er ien ce, it is ob ser v ed a com p lex p h en om en on
t hat com pr ehends feelings, concept ions, and m ent al
represent at ion one has of oneself. I t is t he pict ure of
t he ow n body and ot her per sonal fet at ur es, w hich a
people for m s, due t o sever al r easons, in his/ her ow n
m ind, along t he life’s cour se.
( ...) som et im es, I t hen t hink: if I did not have lost
alm ost t en year s as a ill per son, I w ould have m ade so m any
t hings, I w ould have finished m y st udies ( E 2) .
Pat ien t s an d h ealt h pr ofession als k n ow t h at
even in t he absence of disease’s m anifest at ions, som e
sym pt om s, such as fat igue, m ay abandon w ho suffer s
t o ex per ien ce a less act iv e life an d in v ar iably t o be
less able of hav ing pleasur es. Lupus’ sy m pt om s and
sig n s can sy m b olize an in sid iou s an d im p er cep t ib le
w ay of inj u r ing or dest r oy in g t he per sonal int egr it y.
Self- concept and self- est eem w alk t oget her and t hese
con d it ion s m u st p r ov ok e a r ealit y r er ead in g . Fr om
t his per spect ive, t he int er view ees rem ar ked t hat t heir
relat ionships w it h relat ives, friends and all t heir w orld
CONCLUSI ONS
Per ceiv ed as a m u lt ip le f aced d isease an d
d u e t o b e a m e d i c a l d i s o r d e r w i t h o u t a c l e a r
d elim it at ion in t h e p op u lar im ag in ar y, t h e lu p u s is
p sy ch o l o g i cal l y r ep r esen t ed w i t h so m e d i f f i cu l t b y
t h e p a t i e n t s . W i t h i t s s o v a r i a b l e a n d w i d e
m an if est at ion s, t h e lu p u s’ m ean in g s also v ar y an d
t hese ones can oft en and er r oneously be confounded
t o o t h e r h e a l t h d i s o r d e r s ’ m e a n i n g s . I t s
u n d iscr im in at in g ch ar act er, in con seq u en ce m ar k ed
by sev er al affect ed or gans, can leav e t he ill per sons,
at least in it ially, con fu sed.
Th e pat ien t s’ r eact ion s in clu de t h e at t em pt
of ident ify ing and r ebuilding t heir s r elat ionships w it h
t h eir ow n st r en g t h s, b u t n o ev er su ccessf u lly. Th e
d i se a se o sci l l a t i o n s i n t e r f e r e w i t h t h e t r e a t m e n t
ad h er en ce an d t h e m ed ical p r escr ip t ion s t h at m ay
sy m bolize doubt s. On t he ot her hand, t hese feat ur es
a l l o w a m o r e ef f ect i v e m ech a n i sm o f d en i a l t h a n
t hose of an acut e illness, for exam ple. To recognize a
lupus ident it y it can spend m uch t im e, t aking t o a lat e
self- con sciou sn ess abou t it s im por t an ce for decidin g
t o pr eser ve a good healt h. The lupus pat ient s’ fam iliar
and int erpersonal conflict s seem t o be associat ed w it h
t h e idea t h at f am ily an d f r ien ds do n ot u n der st an d
t he disease nat ur e and t he pot ent ial causes of fat igue
and ot her indisposit ions.
Finally, it is r ecom m ended t o r ecognize t hat
p o o r se l f - e st e e m m a y sy m b o l i ca l l y r e p r e se n t t h e
ex ist en t ial r ealit y of b ein g d iseased , as w ells as a
fact ual sign of clinical depression. Dissat isfact ion w it h
t h em sel v es, w h i ch i s m a i n t a i n ed w i t h t h e i l l n ess,
accom pan ied by loss of in t er est in t h in gs an d ev en
f a n t a si e s f o r d e a t h , m i g h t b e i n v e st i g a t e d a s a
pr oblem t r igger ed by lupus chr onic life ex per ience in
or der t o est ablish an adequat e t r eat m ent .
ACKNOW LEDGMENTS
To t h e i n f o r m a n t s , w h o c o n t r i b u t e d
alt r u ist ically t o t h is st u dy. Sin cer e t h an k s t o Telm a
Finar di for pr oofr eading t his ar t icle.
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