I was always active as a young child, and during my teenage years, I was in an orchestra and marching band.
I noticed during this time that I became tired easily, and occasionally had difficulty breathing.
I also fainted twice during this period, but thought nothing of it and didn’t seek medical care.
In university, I was happy and very active in the uniformed body Kesatria, even holding the position of platoon leader.
However, my fatigue worsened and I fainted yet again.
This time, I was taken to the hospital, but was told that I was overworked and should therefore rest.
By the time I turned 30, the fatigue was permanent and I had severe back pain.
I had gotten married and had five children by then.
I started to hunch and that made me go to the hospital.
I was put on physiotherapy for a year, but it only temporarily helped with the pain.
I was finally diagnosed with ankylosing spondylitis (AS) in 2014 at the age of 44 after I visited a rheumatologist.
That was a 14-year delay in diagnosis.
I am now disabled with limited movement of my spine and neck.
I walk in a stooped position with a walking stick.
I am unable to walk long distances or lie flat on my back.
People don’t understand my disease and it is very difficult to explain it to them.
When you have severe fatigue, but look normal otherwise, your employers tend to think you’re lazy and a poor worker.
In my case, because I already have deformities of the spine and am in a wheelchair, people don’t question me too much.
But in my son’s case, it is different – they don’t believe him when he says he is in pain.
Yes, we are both positive for the HLA-B27 gene, which is associated with AS, and both of us have the condition.
Another issue is funding for my medication.
I use biologics, which are expensive, to prevent further progression of my disease.
The financial aid I get is partial, and I’m worried about not being able to afford the medication in the future.
My condition will deteriorate further if I stop the medication.
I now work as a freelance trainer for the Food Safety and Quality Division of the Health Ministry.
My income is based on whether I am well enough to work and job availability, thus it is not fixed.
On bad days, when my disease flares and my joints become swollen, I am unable to work.
I want people to be aware of this disease.
There are many causes of back pain, and most people think it’s due to a slipped disc or something else, and don’t bother to get it checked or treated early.
I want employers to be more understanding about the disease.
I want non-rheumatology doctors to be aware of this disease and refer the patients to a rheumatologist early.
My nightmare is missing my medication and my disease flaring.
I once delayed taking the medication by two weeks and my joints got swollen and painful.
I cannot walk long distances and can experience difficulty in breathing.
My dream is to be able to walk without difficulty and not be in pain.