Labelled as too sick to work, a 37-year-old man was robbed several chances of obtaining employment as employers believed he would not be competent to carry out regular functions.

In another case, a 26-year-old man would endure hours of pain at health facilities but was still given inadequate medication after the lengthy wait period.

Additionally, a 50-year-old woman tells of spending almost 24 hours in hospital before getting treatment for severe pain.

These are the heart-breaking experiences of people living with sickle cell disease who shared their stories just days after Jamaica joined the international community in observing World Sickle Cell Day.

Last Monday, president of the Sickle Cell Support Foundation of Jamaica Camille Daley shared that discrimination is a long-standing issue among people living with the disease as they are being turned away from jobs or labelled as drug addicts for requesting pain medication.

Speaking with the Jamaica Observer, the 37-year-old man, who requested anonymity, described job hunting as a “bitter experience” because as soon as he mentioned having the disease mid-interview, employers would no longer be interested.

Recalling his experience at a government entity, he said, “I did the interview and the interviewers were more than impressed so they scheduled a second interview and said they would speak with my references in the meantime. Upon waiting to do the second interview I was duly notified, via e-mail, that I was not selected.”

He said when he enquired about being turned down, he was told that although he would be a competent and reliable worker, they are of the notion that people with sickle cell are ‘sicky-sicky’.

In another job interview, the man noted that mid-interview when he explained that he had sickle cell, the interviewer’s body language and attitude changed. He was eventually told that having him on staff would increase the company’s insurance premium.

Noting that he is currently employed and only his managers are aware of his condition, he has to wear enough clothes to manage the cold environment at his workplace.

“Extreme heat and extreme cold are triggers for people with sickle cell and will cause a lot of pain. Currently, I have to wear two compression tights, a shorts, two socks and I have put on a merino and two shirts under my work shirt just to keep warm because if the cold penetrates long enough it would be a problem,” he said.

“Recently, I was putting on the compression tights and I tripped and fell and almost dislocated my knee and I sat in my bed and started crying and I said, ‘Father, why me? Thirty-seven years of pain and misery.’ When I look and see my friends living normal lives, getting married, why can’t I seem to enjoy that,” the man said.

Meanwhile, the 26-year-old man shared one of his ordeals of waiting hours to get medical assistance at both private and public health facilities.

“Since October of last year, it is an issue with getting certain medication. For example, in May I went there from about 10:00 pm till about 7:00 am and the only thing I got was two Panadol the entire time,” said the man who shared that he would usually receive a stronger pain relief medication called pethidine.

“I was complaining about having a lot of pain and I was there just waiting. There weren’t a lot of persons there so I don’t understand why it took so long for me to get through. Eventually, I was told to wait another four hours for a Voltaren injection,” he added.

He said the poor treatment caused him to feel as if he should be blamed for being born with the disease.

“It makes me feel as if it was my fault. It’s like I went to the supermarket and said I’m going to pick up sickle cell or went to the shop and said ‘Sell me two pounds of sickle cell.’ I did not ask for this. I wish more medical personnel would be patient and research,” he shared.

The 50-year-old woman had a similar story. She recalled being admitted to hospital for chest pain in 2020, but did not get assistance until the following day.

“I was on the ward in pain and I was calling out for help and nobody was paying me any attention. When visiting hours started and my daughter came to look for me, she was shocked as they didn’t give me anything for the pain as yet. I remember at one point calling one nurse and she said she alone on the ward and she alone can’t give me the medication,” she said.

The woman said it was not until 2:00 am the following day that she got the medication.

“My daughter called back about 10:00 pm asking if I got anything for the pain and I told her ‘no’. My chest was really hurting me so she called the hospital and the nurse eventually asked why I allowed my daughter to call the hospital. When I got the medication, I still left the hospital in pain,” she said.

That ordeal, the woman said, was her second such experience.

She hopes that people will be more caring towards people with sickle cell.

“Pain is not a nice thing. Anybody can get pain, you don’t have to have sickle cell to get pain. They wouldn’t want to have sickle cell and people treat them the same way. I remember growing up as a child, persons used to say, ‘You have sickle cell, you nah live over 21’. It’s better when you’re sick and you know what happen to you than when you are sick and you don’t know what happen,” she said.