Newsday's Ayana Huggins tells of living with lupus

Ayana Huggins’ is one of the first faces anyone entering Newsday's office, in Port of Spain, will see. Her pretty smile and professional demeanour has been an asset to the company's advertising unit for the past 13 years.

But there are many days when Huggins’ look and actions belie what is happening on the inside.

For over 15 years, the advertising clerk has been living with lupus – an autoimmune disease that causes inflammation that can affect the skin, joints, heart, lung, kidneys, circulating blood cells, and brain. Lupus occurs when the immune system, which normally helps protect the body from infection and disease, attacks its own tissues.

“When I get flare-ups, I wake up in pain and I go to sleep in pain,” Huggins told WMN.

“I’ve never been burned by acid, but sometimes the pain feels like what I think acid would feel like burning through my joints and muscles...There are times when I just sit at my desk and eat my pain. Sometimes I take six to eight doses of painkillers a day just to get through the pain,” – something that very few of her co-workers even notice because she masks it so well.

“Doing this interview is hard for me because I'm a very private person. Besides my family and very close friends, not many people know about my illness. My mom tells me because I keep everything inside it adds to the stress, and my sister told me I should talk about it. Maybe they’re right because I feel better talking with you about it,” she said.

Huggins was diagnosed in 2008 after years of doctors’ visits for mystery illnesses and the frustration of not knowing exactly what was wrong with her.

“I just used to be getting sick a lot. If I went out in the sun I would get joint pains and a rash on my face. I was often very fatigued and many times I got a low-grade fever, but physically, the doctors weren’t seeing anything wrong. This went on for years."

It was not until one of her uncles, with whom she was really close, died suddenly that she began to get a breakthrough to the source of her constant illnesses.

“I wasn’t dealing well with his death and I kept getting sicker. My GP sent me to haemoglobin specialist, who found that my platelets were very high…The specialist was the first to suspect lupus and did some bloodwork to test, but the report was inconclusive because lupus is a hard disease to diagnose.”

A high platelet count can cause blood clots to form in the blood vessels, blocking blood flow through your body, which in turn can cause heart attack, stroke, damage to the body's organs or even death.

Huggins continued to live and work with the pain.

“Then my mom got sick and the specialist tested the both of us for lupus. When the results came back, she was borderline and I was positive…I felt relieved that I no longer had to be wondering what was wrong with me. It was frustrating to be going by doctors and none of them could tell you what was happening with your body.”

And although she has to do bloodwork every three months to test for inflammation and to ensure that her organs are functioning properly, and everyday she has to take Hydroxychloroquine – a disease-modifying anti-rheumatic drug – and steroids whenever she gets a flare-up, Huggins said the disease is not a death sentence. But, she said, because the drug suppresses her immune system to prevent it from attacking itself, it leaves her open to “catching any and everything."

“I have to make sure I eat right and take my vitamins. In addition to lupus, I’ve also been living with asthma, which went dormant for a while until I got covid19 last year. I now have long covid, which weakened the lining in my chest so I get a lot of breathing problems…The last lupus flare-up I had in July caused my hair to start falling out. That was really scary! The butterfly rash on my face was raised and puffy, and the fatigue was like covid fatigue times 100. It was like I was dragging my body to do every single thing.”

Although Huggins followed her doctor’s advice during that flare-up and got some much needed rest, she said she doesn’t usually use her illness as an excuse to take time off from work.

“And it’s not because my employers have not been supportive. They have, especially my current supervisor. It’s just the way I am.”

So much so that when Huggins found out she was pregnant, she ignored her doctor’s advice to abort her baby, and went through the entire pregnancy with very few complications.

“My doctor said it would have been too much of a strain on my body, but God kept me through my nine months. I had no flares. My daughter is ten years old now, and since lupus could be hereditary, she may or may not have it. We will not know unless she gets symptoms.”

There are many triggers for lupus flare-ups, among them lack of rest, over-exposure to direct sunlight, infections, injuries and certain types of meds. For Huggins, her biggest trigger is stress, which she tries her best to control.

“But you know that is easier said than done.”

And in addition to that, she has made some dietary and lifestyle changes that help her control the disease.

“I don’t consume much alcohol. I’m a meat lover, so I can’t cut it out entirely, but I eat in moderation,” she chuckled.

“I also include more fish oil and blackseed oil in my diet…I try to do wall pilates as often as I can, unless I’m going through a flare-up. I don’t exercise then because it puts strain on my muscles and joints. Mentally, exercise makes me feel better and helps with sleep. On a good night I may get three to four hours of sleep, because I have insomnia, which is a side effect of lupus. Then I experience a lot of brain fog, which comes with both lupus and covid. I got a double whammy there.”

Had it not been for her support system, Huggins doesn’t know how she would have coped living with lupus.

“When my mom and I were first diagnosed, we joined a support group but never kept up with it. There are times when I feel isolated because, apart from my mom, nobody else in my circle has lupus so they don’t know exactly how I feel. But they give me the support I need.”

And in as much as she doesn’t easily open up to people about her condition, Huggins said she’d be open to counselling to deal with it.

“It’s just that everything is a cost, financially. I prioritise everything and that is not a top priority now. But maybe I should try to prioritise myself sometimes.”

For people who are finding it hard to cope with life with lupus, Huggins advises that they find someone with whom they can talk and relate.

“This is a lonely disease. People see you smiling, but no one knows your level of pain because the physical symptoms don’t always show. Emotionally, you don’t have to feel like you’re carrying this burden alone. Maybe I should take my own advice,” she smiled.

Huggins laughed aloud when asked about a social life.

“Sometimes I try to go out, but many times I can’t because of the pain, sometimes I just have no energy. My life now just revolves around my daughter,” and the online degree in human resource management which she should complete by end of this year.

Additional facts about lupus:

Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease.

Lupus is not like or related to HIV or Aids. In HIV or Aids the immune system is underactive; in lupus, the immune system is overactive.

Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.