Photo by Avia Collinder
Rachel Cunningham, multi-talented food and beverage and media expert, is unable to work because of lupus.

Avia Collinder, Outlook Writer

It takes hours for Rachel Cunningham to get dressed each day. Every morning, she awakes to pain and is forced to wait a long while before she can get her joints to move.

Attractive and articulate, the 28-year-old has been thwarted from her dreams of being independent - she hopes - only momentarily.

Living as a patient with lupus, she is hoping that she can find friends and an employer will understand and aid her so she can achieve the destiny she has worked all her life for.

Lupus is defined as a chronic, inflammatory, connective tissue disease that can affect the joints and many organs, including the skin, heart, lungs and kidneys.

Lupus patients who are luckier than Rachel have someone to help dress them daily, but this - admittedly - is not even on the list of what the young woman says she needs.

Last week, she was also out of money for medication, but at the very top of her list, then, was someone to listen.

Publishing her tale

Calling all the local women's organisations, it was Faith St Catherine at the Women's Resource and Outreach Centre who answered, called her in to talk, and decided that publishing her tale was the only way to help her.

Although Rachel was diagnosed with lupus eight years ago, she says she believes she had it long before. In high school at Wolmer's Girls' School, she had arthritic pains but was never treated for the condition. At school, she was often unable to do physical education because of shortness of breath.

Later, while attending at the University of Technology, she developed rashes on her skin, had headaches and hair falling out. Two medical tests in third year confirmed that she had the autoimmune disease.

"In a weird kind of way I was relieved to find out," she recalls.

Now, could she avoid the things, such as red meat which aggravated her condition, but which she would eat without being aware of why she would develop health problems?

On the other hand, when, over time, she came to understand what lupus was, it was "devastating and depressing".

Juggling three jobs

At the time of her diagnosis, Rachel was attempting to complete her degree in food service management at UTech, as well as working three jobs - one with J. Wray and Nephew on weekends, another in clubs at nights as a waitress/bartender, and the last on campus as a waitress.

" I had no options," she reflects.

Left by her mother to live with her stepfather at age 13, along with her four siblings, life has always been very stressful for Rachel. She finished her university programme, but never got her degree because the Student's Loan Bureau, discovering that she had lupus in 2002, terminated her loan.

The university, in turn, barred her from doing her final examinations because of unpaid fees.

But, with her 'never-say-die' philosophy, Rachel plunged ahead into work. "I have never been one to accept handouts. It makes me feel weird inside. I even try to avoid persons seeing me sick," she admits.

Had to leave jobs

Since leaving school in 2003, the young woman has held a number of jobs, but has had to leave them all because of frequent illnesses. Rachel has worked in media and entertainment, in public relations and marketing and as a food and beverage supervisor.

"I am a perfectionist … I hate to see people slacking off. They don't know what they have."

Unable to work full-time, she subsequently started doing her own thing - starting a magazine for career entertainers, but even this has languished because of her health.

Since September 2006, her condition has been even more painful, in more ways than one. Going in and out of the hospital, she has been unable to earn or save.

Rachel has been taken three times to the hospital emergency units in Kingston, in one case with a severe case of vomiting that lasted a week. She believes that her frequent attempts to return to work is making her condition worse.

In 2007 she developed breathing complications and swellings in the chest area. "It is more frequent now. Several times a day I stop breathing. It is weird."

While she has been keeping active by helping her friends with the weekly Jamaica Vibes event, she currently has no income, except small gifts from friends and family.

"When I get (a gift of) $2,000 it is difficult for me to know what to do. Should I save it towards my rent? Should I go to the doctor and check out this chest pain? Do I buy food? Suppose I buy groceries and then I am sick tomorrow and am unable to prepare it?" Rachel asks, as she outlines her recurring dilemma.

Such are the painful decisions facing her month after month.

Rachel says she has told her landlady that she will move soon as she is no longer able to afford the rent of $15,000. But she does not know where to go.

"I need a break," she says, explaining that she would appreciate getting somewhere where there is no expectation of payment or rent and other bills for a while.

Rachel says that she has never considered suicide. But, often, the pain of living is so great that she packs her bags with plans to run away - away from people, she says, who make her feel as if she is a burden.

She is also frustrated with the Student's Loan Bureau which - although it cancelled her loan and prevented her graduation - is still "hounding" her for the outstanding amount owed for first and second year at UTech.

Her main source of joy in life are her friends who have been good to her, she says, although their resources are very limited. She enjoys their company and loves nothing better than shooting the breeze and discussing world affairs with her pals.

In the long run, the self-confessed workaholic wants an employer who will utilise her skills, but will also understand that she will need frequent time off for rest and recovery. Her life features good days and bad days.

"It's a continuous cycle. I am coming out of a bad phase right now and I am afraid of overdoing it, but I am conscious of the need to work," she told Outlook.

"Maybe I should not be working, but I need to keep active.

"It's a relief to share with someone," Rachel says. "It relieves the pressure."

Her list of needs are long, but she is happy and hopeful, she says, now that she has found someone to hear.

To learn more about lupus, go to www.wehavelupus.com. Email Rachel at rach_cunning@yahoo.com.