Tinesha shows resilience while living with lupus 

IT’S 2023. Tinesha Gonzales-Gordon Woods is hospitalised. Her body feels so weak and her frame has become so frail that she does not think she’s going to survive. Her diagnosis? Lupus nepritis.

She prays, she cries, and she prays again. And she survives.

Today, she recounts that very triumph as she raises awareness about the chronic disease and supports others who are living with it.

Gonzales-Gordon Woods, 29, hails from Trincity.

In contrast to the public-facing, outgoing person she has become, she said she was “very quiet and reserved.”

Her experiences over the past two years brought about this change.

In an interview on May 8, she told WMN that in 2023, she caught a cold that did not seem to be going away.

“And then I started to look different…My feet started to swell, my legs were swelling.”

But she chalked it up to her just “being really sick” so she “didn’t really take it on.

“But my mum was a bit concerned because I was just sleeping all day. I was really tired and weak, marks started to come up on my arms, and I thought I just got bitten by a mosquito or something. But then the rash started on my face.”

She said one of her aunts told her the symptoms she had sounded like lupus.

“I was like, ‘No way’ because everything that I’ve heard about lupus is that people die from it. So I was like, ‘No, no, no, I don’t have that. I don’t have that.’”

She visited a private doctor for a check-up, which included a blood test.

The results showed she had a lot of inflammation in her body.

She was advised to use some medication but did not feel any better. In fact, she said, she felt worse.

“My mother knew somebody who was at San Fernando General Hospital and called them. Then she said, ‘Pack your things. We are going to the hospital.’”

‘You look like you’re about to die’

She did not get many positive remarks about how she was looking at the time.

“I was looking like I was about to die. That’s how everybody explained it to me. They (my family) all said, ‘Something is definitely wrong.’”

Asked if she agreed with them, she said she was avoiding looking at her reflection.

“ I became very unrecognisable to myself. It was hard to look at myself in the mirror.”

She added, “My now husband and boyfriend at the time (Jameké Gordon Woods) still used to reassure me: I see you for you.”

She said the doctor at the hospital “kind of already knew what was going on” just by looking at her. And after all the tests, it was confirmed that she had lupus nephritis.

Lupus nephritis is the inflammation of the kidneys owing to lupus.

Lupus is a chronic, autoimmune disease – a disease that causes the body’s immune system to attack its own tissues and organs.

One common symptom is a face rash that is similar to the shape of a butterfly. Some people also experience hair loss, in addition to symptoms like fever, swelling, fatigue, joint pain, etc.

People with lupus can generally live a fairly normal life but it can be fatal.

Gonzales-Gordon Woods said, “I was just feeling sick. I was sad. I was like, ‘What is happening? I asked God, ‘What is happening?’ I prayed, cried, prayed, cried, prayed, cried…”

She got steroids to bring down the inflammation and suppress her immune system, she explained.

She remained in hospital for a month – the longest she had ever been hospitalised.

“It was a bit scary because I had never really been on my own before that. I was used to constantly having people around me that I could speak to. At the hospital, that changed to feeling totally isolated. It was just me, the doctors, nurses and other patients in the room.”

Asked if she felt she was going to survive, she said no. She said she never expressed that feeling to anyone else before, either.

“Honestly, when you are sick, sometimes you feel like you have to hide how you feel about the situation because you don’t want to worry them or get them scared. Just having to put on a brave face for them and not just be like, this is how I actually feel.”

She also had a three-year-old daughter, Genesis, at home. And while she was a bit comforted in the fact that her family was taking care of her, there was still a lot of fear and discomfort.

“(I was thinking) If I don’t make it, what is she going to do without her mother? Everything is mama, mama, mama. How am I supposed to just let her go on in this world without me? I used to think about it and just cry.

“I missed those moments when I could have been outside with her, just playing our little games, talking…listening to her ask questions about everything, the cuddles, hugs and kisses and all these things.”

She said the day she was told she could go home was “the most exciting moment of her life.

“I was just happy because I was just waiting for the day that they would say that.

“I had been in the hospital so long and I fell into a bit of a depression. I saw people die right there next to me, in front of me. It really does get very sad.”

She said the first thing she did when she got home was take a very long and proper shower. Laughing, she recalled not having “the luxury” of taking “really nice baths” at the hospital.

“So I did that and I rested.”

She had to adjust certain aspects of her lifestyle to ensure she remained healthy.

For example, she lowered her salt intake, so too fast food and things like garlic.

“Because with the kidney issues, salt is not your friend and grease is not your friend. And then I had issues consuming garlic.

“For a lot of things, I had to look at it in the context of, okay, this food could affect my immune system differently now.”

For some, exposure to direct sunlight can cause lupus flares, where symptoms worsen.

Because of this, she tries her best not to be in direct sunlight between 9 am and 4 pm. She also had to find alternatives to skincare products she usually used.

“Fatigue is another thing, so I had to kind of figure out, okay, what am I able to do? How much am I able to give?

“I even had to cut down on being around people as well because if somebody’s sick that I’m around, if they cough, if they sneeze, I could possibly contract what they have.”

The same year she was diagnosed, she joined the local NGO The Voice of Lupus Foundation.

“I was looking for somebody in TT who knew about it and someone who could give me information about living with it. So I did the thing that a young person would do and I went on Instagram and I stumbled on the page.”

“I wanted to join immediately,” she added.

Upon joining, she felt both seen and heard as she had found a new community.

She is now a support group moderator and youth ambassador there.

“The public really needs to know and understand that lupus is scarier than we think because it affects all of our organs. It’s not a one-system thing. Eyes are affected, skin is affected – everything.

“There should be more recognition of this and more information available to the public. And we may not look sick, may not look like we are on our last breath, but we do have a real disease.”

She said she takes pride in encouraging others to be compassionate and to show love to those who are living with lupus.

May is Lupus Awareness Month.

“The NGO has given them a voice to listen because they also speak up about lupus. And (founder Reeanna Harrilal) has given all of us a space where we could feel like a family, that we’re not alone in the fight, we have each other to lean on.”

The Voice of Lupus Foundation can be found across social media platforms.