Fay­ola K J Fras­er

Lu­pus is a silent bat­tle fought dai­ly by mil­lions—a chron­ic au­toim­mune dis­ease where the body’s de­fence sys­tem turns against it­self, mis­tak­en­ly at­tack­ing healthy tis­sues and or­gans. This trig­gers in­flam­ma­tion, pain, and dam­age that can strike any­where—from the skin and joints to the kid­neys, heart, lungs, brain, and blood cells.

The ex­act cause of lu­pus is un­known, but re­search points to a com­plex mix of ge­net­ic, hor­mon­al, and en­vi­ron­men­tal fac­tors. The dis­ease can af­fect any­one, but it is most com­mon­ly di­ag­nosed in women be­tween the ages of 15 and 44.

Every May, the glob­al spot­light turns to lu­pus dur­ing Lu­pus Aware­ness Month, with World Lu­pus Day marked on May 10. Dur­ing this time, ad­vo­ca­cy groups, pa­tients, and health­care pro­fes­sion­als come to­geth­er to raise aware­ness through shar­ing sto­ries, host­ing events, spread­ing ed­u­ca­tion­al ma­te­ri­als through­out so­cial me­dia, and do­ing com­mu­ni­ty out­reach.

These ini­tia­tives are more than sym­bol­ic—they help spark em­pa­thy, en­cour­age ear­li­er di­ag­no­sis, and dri­ve sup­port for life-chang­ing re­search. By rais­ing aware­ness, we build a more in­formed, com­pas­sion­ate world—where those liv­ing with lu­pus are seen, sup­port­ed, and em­pow­ered.

Sea­soned Trinida­di­an jour­nal­ist Resh­ma Ra­goonath has been liv­ing with lu­pus for the past 15 years. For Ra­goonath, the ear­ly signs were sub­tle but per­sis­tent: sore throat, un­ex­plained fevers, joint aches and swelling, mouth ul­cers, and a tell-tale but­ter­fly-shaped rash across her cheeks when ex­posed to sun­light.

Like many with lu­pus—es­pe­cial­ly dur­ing a time in Trinidad when the dis­ease was not wide­ly recog­nised—her jour­ney to di­ag­no­sis was long and frus­trat­ing.

“It took six months and a lot of mon­ey spent on blood tests and scary doc­tor’s vis­its,” she re­calls, re­mem­ber­ing when she was “in front of the doc­tor, and my hand start­ed swelling like a bal­loon, and I pan­icked, and the doc­tor even pan­icked more than me”.

At 34, she was di­ag­nosed with lu­pus and de­scend­ed in­to the dif­fi­cult emo­tion­al jour­ney that went along with the di­ag­no­sis, feel­ing hope­less and an­gry that she had to con­tend with this com­plex and lim­it­ing dis­ease.

Work­ing as a jour­nal­ist, which re­quires long, dif­fi­cult hours, Ra­goonath has had to man­age her symp­toms while be­ing present in her work. “Liv­ing with lu­pus is like a bin­go card,” she said, “I nev­er know what symp­toms I’ll get. But pain is my con­stant com­pan­ion.”

In­deed, not on­ly does lu­pus man­i­fest dif­fer­ent­ly for every­one, but stress trig­gers symp­toms, of which there are nu­mer­ous.

Now liv­ing in the Cay­man Is­lands and work­ing as a se­nior pro­duc­er and news as­sign­ment ed­i­tor at Com­pass TV, Ra­goonath un­der­took the stren­u­ous role as a sig­nif­i­cant part of a team do­ing a project to re­vive lo­cal tele­vi­sion on the is­land.

Bal­anc­ing this high-stress job while bat­tling a chron­ic ill­ness con­tin­ues to be a great chal­lenge, but Ra­goonath cred­its her sup­port­ive team, who al­ways checks in on her and brings food and sup­plies when she is hav­ing a lu­pus flare-up. “That’s the kind of sup­port a lu­pus war­rior needs,” she said, “not pity, but sup­port, com­pas­sion and un­der­stand­ing.”

Ra­goonath has found pur­pose in her dis­ease through­out the years that she has lived with it. Through­out her chal­leng­ing jour­ney, she’s asked her­self what the greater pur­pose for her hav­ing lu­pus could be and where she can make a dif­fer­ence.

Hav­ing cy­cled through var­i­ous med­ica­tions and treat­ments, some of which lose their ef­fi­ca­cy af­ter some time, she is ded­i­cat­ed to rais­ing aware­ness for peo­ple liv­ing with lu­pus and feel­ing alone, un­seen and down­trod­den.

Three years ago, she found­ed “Wings of Hope: Lu­pus Sup­port Group Cay­man Is­lands” on Face­book, now 147 mem­bers strong—a sig­nif­i­cant num­ber for such a small coun­try. The ini­tia­tive be­gan when a friend in mar­ket­ing at the Cay­man Is­lands Health Ser­vices Au­thor­i­ty pub­lic hos­pi­tal asked her to speak pub­licly dur­ing Lu­pus Aware­ness Month, a de­ci­sion that she did not take light­ly.

“Open­ing up about my ill­ness took strength,” Ra­goonath said, but as a jour­nal­ist, her life has been ded­i­cat­ed to telling sto­ries and rais­ing aware­ness, and she saw this op­por­tu­ni­ty to speak up about lu­pus as an ex­ten­sion of her pro­fes­sion­al pur­pose.

Ra­goonath’s ad­vo­ca­cy has al­ready made waves. “Peo­ple start­ed reach­ing out, es­pe­cial­ly new­ly di­ag­nosed peo­ple.” This plat­form al­lowed her to share re­sources, get gov­ern­ment build­ings lit up in pur­ple for Lu­pus Aware­ness Month and cre­ate a con­ver­sa­tion around lu­pus, turn­ing the spot­light on a dis­ease that’s of­ten in­vis­i­ble.

Part­ner­ing with doc­tors to raise aware­ness, she is work­ing on a preva­lence study in the Cay­man Is­lands to as­cer­tain how many peo­ple are liv­ing with lu­pus. Ac­cord­ing to her, get­ting a bet­ter ap­pre­ci­a­tion of the preva­lence and the con­sid­er­a­tions that lu­pus re­quires will help shape med­ical and in­sur­ance poli­cies, as the in­sur­ance costs for hav­ing a chron­ic ill­ness are as­tro­nom­i­cal.

Ref­er­enc­ing her own ex­pe­ri­ences, she has ex­haust­ed her in­sur­ance al­lowance al­ready for the year and there­fore has to pay out of pock­et for treat­ment and med­ica­tion go­ing for­ward.

To any­one new­ly di­ag­nosed, Ra­goonath of­fers this heart­felt mes­sage: “I’ve been there. The anger, the hope­less­ness, the ‘why me’ mo­ments. But you are still you. This dis­ease doesn’t de­fine you—it just adds a lay­er to your strength. You are a war­rior. And war­riors don’t give up.”

Through her words, her ad­vo­ca­cy, and her un­wa­ver­ing re­silience, Resh­ma Ra­goonath con­tin­ues to be a pow­er­ful voice for lu­pus war­riors every­where, dri­ving change and broad­en­ing aware­ness through­out the re­gion and be­yond.