SAN­DRA L BLOOD

blood­l­sandy@gmail.com

Stacey-Ann Noel is rewrit­ing what re­silience looks like. Di­ag­nosed with lu­pus at just 27, she is de­ter­mined not to let the chron­ic ill­ness de­fine her. She finds ways to bal­ance her flare-ups and re­main pos­i­tive, heal­ing with med­i­ta­tion and mu­sic, and draw­ing strength from her bond with her pets and her sis­ters.

To­day, she is us­ing her voice to shine a light on the in­vis­i­ble strug­gles of peo­ple liv­ing with lu­pus—and to im­plore work­places and com­mu­ni­ties treat them with fair­ness, dig­ni­ty, and com­pas­sion.

Noel, who is from Ari­ma, said she loves liv­ing in her com­mu­ni­ty of birth and is even more proud to be a prod­uct of the school she at­tend­ed—Ari­ma Sec­ondary. She lat­er ad­vanced to Ham­mer­smith and West Lon­don Col­leges.

Born to Ho­race and Car­o­line Noel, she is the last of three sib­lings, with Rachel and Sophia be­fore her, and con­tin­ues to have a pas­sion for read­ing and lis­ten­ing to mu­sic for re­lax­ation.

“I al­so med­i­tate and spend a lot of time with my two dogs and two cats, even though one cat be­longs to my neigh­bour but de­cid­ed to move in,” Noel glee­ful­ly as­sert­ed. “I of­ten won­der if they sense health. When I look at my­self, I see a nor­mal per­son who loves con­sum­ing wa­ter and sal­ads but is on no spe­cial di­et. I try to eat as health­ily as pos­si­ble.

“Iron­i­cal­ly, my favourite colour turns out to be pur­ple—the brand colour for the con­di­tion lu­pus—which I liked long be­fore be­ing di­ag­nosed in 2010 at age 27, and be­fore my sec­ond sis­ter, who is a US-based nurse, Des­ta Sophia Noel, was di­ag­nosed a year be­fore me. I turn to her for ad­vice or sup­port, and we ex­change ex­pe­ri­ences with each oth­er,” Noel stat­ed.

Ex­plain­ing lu­pus, Noel said, “It is Sys­temic Lu­pus Ery­the­mato­sus (SLE). It’s an au­toim­mune dis­ease in which the body’s im­mune sys­tem mis­tak­en­ly at­tacks healthy tis­sue. It can af­fect the skin, joints, kid­neys, brain, and oth­er or­gans.”

Re­flect­ing on her school and work ex­pe­ri­ences, Noel said it was dif­fi­cult ini­tial­ly to cope and ac­cept her di­ag­no­sis, but she couldn’t be de­feat­ed, even though she didn’t quite un­der­stand her­self. As an em­ploy­ee, she was un­able to work for two years af­ter be­ing di­ag­nosed and at­tend­ed week­ly clin­ics at Port-of-Spain Gen­er­al Hos­pi­tal.

“Be­cause I didn’t look sick, I was as­signed the work­load of two peo­ple and ex­pect­ed to per­form with­out ac­com­mo­da­tions. And I did! I met dead­lines, even while work­ing in en­vi­ron­ments that were detri­men­tal to my health,” she re­vealed.

“This ex­pe­ri­ence is far too com­mon for those with in­vis­i­ble ill­ness­es like lu­pus. When symp­toms aren’t out­ward­ly vis­i­ble, oth­ers of­ten down­play or dis­miss the re­al­i­ty of the con­di­tion. But here’s the truth: be­ing pro­duc­tive doesn’t mean you’re not suf­fer­ing. And de­liv­er­ing re­sults un­der un­fair con­di­tions doesn’t make those con­di­tions ac­cept­able. Em­ploy­ers have a du­ty to recog­nise and sup­port em­ploy­ees with chron­ic ill­ness­es—vis­i­ble or not. Ig­nor­ing a di­ag­no­sis sim­ply be­cause some­one ap­pears ‘fine’ isn’t just in­sen­si­tive. It can be dis­crim­i­na­to­ry,” she chid­ed.

Noel fer­vent­ly ad­vo­cates that em­ploy­ees with lu­pus should not be treat­ed un­fair­ly or ex­clud­ed. In­stead, they should be sup­port­ed through rea­son­able ac­com­mo­da­tions that help them thrive at work with­out com­pro­mis­ing their health.

“Lu­pus caus­es fa­tigue, joint pain, pho­to­sen­si­tiv­i­ty, and cog­ni­tive chal­lenges. These symp­toms can fluc­tu­ate, mak­ing it hard­er to main­tain a con­sis­tent work rou­tine with­out sup­port,” she ex­plained.

Re­sort­ing to log­ic, Noel said, “It’s not about favouritism. Sup­port­ing em­ploy­ees with lu­pus isn’t about giv­ing them spe­cial treat­ment. It’s about lev­el­ling the play­ing field so they can con­tribute ful­ly with­out risk­ing their health. Just like some­one with a bro­ken leg might need a ramp, some­one with lu­pus might need a cool­er work­space,” she fur­ther jus­ti­fied.

She ex­plained what em­ploy­ers can do to as­sist work­ers:

• ↓En­sure cool work en­vi­ron­ments to pre­vent heat-trig­gered flares

• ↓Flex­i­ble sched­ules or re­mote work op­tions

• ↓Er­gonom­ic equip­ment to re­duce joint strain

• ↓Re­duced ex­po­sure to UV light or harsh light­ing

• ↓Rest breaks or mod­i­fied du­ties dur­ing flare-ups

Noel al­so drew ref­er­ence to le­gal pro­tec­tions found with­in the Equal Op­por­tu­ni­ty Act—the key leg­is­la­tion that pro­tects em­ploy­ees with dis­abil­i­ties in Trinidad and To­ba­go.

• ↓De­f­i­n­i­tion of dis­abil­i­ty: in­cludes phys­i­cal, men­tal and psy­cho­log­i­cal con­di­tions—such as lu­pus—even if they’re not vis­i­bly ap­par­ent.

• ↓Pro­tec­tion against dis­crim­i­na­tion: em­ploy­ers can­not treat dis­abled em­ploy­ees less favourably in terms of salary and em­ploy­ment con­di­tions; pro­mo­tion, train­ing, or trans­fers; and ter­mi­na­tion or dis­ci­pli­nary ac­tions.

• ↓Job ap­pli­cants: dis­crim­i­na­tion dur­ing hir­ing—in­clud­ing how in­ter­views are arranged or of­fers are made—is pro­hib­it­ed.

Though Noel recog­nis­es she may some­times feel like a lone voice, she trusts God’s guid­ance and be­lieves that she must use her ma­ter­nal, car­ing, sin­cere, and lov­ing na­ture to bring aware­ness, com­fort, heal­ing, and pos­i­tive change.