Life with an in­vis­i­ble con­di­tion

The chal­lenges of liv­ing with a hid­den dis­abil­ity

The Irish Times - Tuesday - Health - - Front Page - Aoife Mo­ri­arty

What do you think of when you hear the word “dis­abil­ity”? All across Ire­land, thou­sands suf­fer from con­di­tions that can be in­vis­i­ble to oth­ers, such as Crohn’s dis­ease, cys­tic fi­bro­sis, arthri­tis and chronic fa­tigue syn­drome. Many feel stig­ma­tised and not fully un­der­stood.

Sarah O’Connell (33) from Cabin­teely in Dublin, was di­ag­nosed with chronic fa­tigue syn­drome (CFS) when her first child was two years’ old, just a cou­ple of months into start­ing a new job as a busi­ness an­a­lyst. That Christ­mas, she was struck down with the win­ter vom­it­ing bug, which was fol­lowed up by a bad throat in­fec­tion.

“I was go­ing back and forth to the GP every cou­ple of weeks or month and say­ing: ‘The sore throat’s still com­ing and go­ing, I feel ex­hausted all the time, I don’t feel like my­self.’ And ini­tially they felt it was kind of a post-vi­ral fa­tigue, which can hap­pen af­ter a nasty in­fec­tion. I was a mother and I was work­ing-full time, you know your­self.

“Af­ter the six month mark hit and it was sum­mer­time, they said it might be more some­thing like chronic fa­tigue syn­drome, which was the new name for ME.”

O’Connell says her di­rect man­ager was “very good about it”. “She said she knew some­body who’d had some­thing sim­i­lar, she was very un­der­stand­ing. My man­ager above her who led the depart­ment, she never said any­thing crit­i­cal but I re­mem­ber her stop­ping me and say­ing, ‘What is that?’ and try­ing to ex­plain. Hav­ing that pres­sure and feel­ing like, ‘I can’t ex­plain this prop­erly, and peo­ple don’t know what it is, they think it’s just be­ing tired’. It’s not tired in a way that any healthy per­son is. It’s a to­tally dif­fer­ent type of fa­tigue.”

Ini­tially, O’Connell tried to stay in her job, but she felt she couldn’t per­form ef­fec­tively. “For me, it was more based on the cog­ni­tive prob­lems I was hav­ing with CFS,” she says. “Phys­i­cally, I’m not go­ing to lie, it was hell. But my men­tal­ity is just to keep pulling your­self up every day.

“But then it got to the point where I would find my­self at my com­puter, I’d be look­ing for a file, and I would for­get what file I was look­ing for. I would be in a meet­ing, and I would to­tally lose my train of thought with six or seven peo­ple who are all your se­niors star­ing at you.

“And I just re­alised, ‘I’m no longer men­tally able to do the job I’m be­ing paid for, it wouldn’t be fair’. Just that feel­ing that I was go­ing to get dis­cov­ered. It’s em­bar­rass­ing, I guess.”

Se­cond na­ture

Jonathan Fitzger­ald is 23 and lives in Lim­er­ick City. He was di­ag­nosed with cys­tic fi­bro­sis, a con­di­tion that af­fects the lungs and the di­ges­tive sys­tem, when he was 12 weeks old.

“I’ve never known any­thing dif­fer­ent. It’s se­cond na­ture now,” he says. “But I’ve picked up two other con­di­tions along the way. They’ve rocked me now al­right but you just take it on the chin and keep go­ing.”

He was di­ag­nosed with Crohn’s dis­ease in 2010 and as pre-di­a­betic in 2012, con­di­tions that are both a re­sult of the ef­fects of his cys­tic fi­bro­sis. He has had long stays in hos­pi­tal due to ill­ness and surgery over the years, in­clud­ing be­ing forced to do his Ju­nior Cer­tifi­cate ex­ams in hos­pi­tal.

Fitzger­ald needs to use neb­u­lis­ers each morn­ing to loosen up the phlegm in his sys­tem, and to take pro­tein sup­ple­ments and di­ges­tive en­zymes through­out the day.

He cur­rently works part-time hours at a Car­phone Ware­house, a job he re­ally en­joys. “My man­ager and as­sis­tant man­ager are ac­tu­ally fan­tas­tic. They know the con­di­tion, they know ev­ery­thing with me. They’re out­stand­ing. If I need five min­utes to go in and catch my breath, they’re great for stuff like that. I have a day off every week for my physio and it changes every week so they’re very ac­com­mo­dat­ing.”

Prior to this, Fitzger­ald worked for a fast-food chain, where his ex­pe­ri­ence was not quite as pos­i­tive. “It started off fine,” he says. “My man­ager didn’t re­ally un­der­stand the con­di­tion. He kind of just as­sumed I was fine in a way, I think. I was get­ting ex­tra hours that I didn’t ask for.

“This would’ve been my first proper job. I tried to ex­plain to him, but he kind of just nod­ded his head and said, ‘Yes, I un­der­stand’, but he was more fo­cused on the busi­ness than any­thing else.”

What does he find hard­est when it comes to ex­plain­ing his health is­sues? “If some­one hasn’t got ex­pe­ri­ence of know­ing the con­di­tion, it’s very hard. Peo­ple just throw ques­tions at you some­times and I kind of feel, ‘Just let me ex­plain when I’m ready’. Some peo­ple can be a bit forth­com­ing with it. You know, ‘What’s wrong?’ ‘What’s this?’ and you’re kind of like, ‘Look, just back off and give me a bit of a space, like’.”

‘Gen­eral stigma’

Dar­ragh Burke (45) from Wick­low knows that feel­ing all too well. He was di­ag­nosed with rheuma­toid arthri­tis 19 years ago, aged 25. “Peo­ple said things like, ‘Oh sure you look great, a young lad like you wouldn’t have arthri­tis. That’s for old peo­ple.’ They pre­sumed I wasn’t sick. I wasn’t miss­ing a limb, I didn’t have my arm in a cast. And that was the gen­eral stigma with it, no mat­ter what way you gloss it up.”

Af­ter the rapid on­set of arthri­tis, Burke was forced to give up his work as a car­pen­ter and builder, and even­tu­ally be­came a stay-at-home dad to his two young sons while wife Louise went to work.

“Things were stress­ful at home,” he con­fesses. “It’s only when you think back you see how much Louise had done and won­der how she coped – a new baby, me be­ing sick, a mort­gage to be paid, a wage less com­ing into the house. But she did.”

By this point, arthri­tis was af­fect­ing “every joint” in Burke’s body: “Your jaw would lock up, or your hands would cramp on your knife or your fork. Head to toe, I was to­tally af­fected.

“She had to help me every day. Get me out of bed, help me into bed. Set me up for the day on the couch, what­ever had to be done be­fore she left. She was my carer re­ally for the first two years, and then she went back to work then when I im­proved.”

In 2013, Burke started a work place­ment at a con­struc­tion safety com­pany in Athy, Co Kil­dare, as part of an em­ployer-based train­ing course. He still works there to­day on a part-time ba­sis. “It helps to have a boss who un­der­stands that liv­ing with arthri­tis is a tough one with ups and downs,” he says.

What would he say to peo­ple who are dis­mis­sive of con­di­tions that they can’t see? “Don’t be so ig­no­rant about what it is. Re­search it, look it up and see what the prob­lems are. Not ev­ery­thing is vis­i­ble.”

They pre­sumed I wasn’t sick. I wasn’t miss­ing a limb, I didn’t have my arm in a cast. And that was the gen­eral stigma with it

PHO­TO­GRAPH: DAVE MEE­HAN

Sarah O’Connell, who has chronic fa­tigue syn­drome, with her chil­dren Jake (3) and Hay­ley (7).

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