Don’t turn your back on AS
I was in a car recently with a friend and she had asked me to simply check for oncoming traffic while she backed her car out of the parking lot. However, my neck was stiff, and I was struggling to move, eventually my friend grew impatient and asked why I could not just turn and check. Even though my friend knew of my condition, at that moment she forgot because, unlike other illnesses we look normal with AS at first, the stiffness and agony are only experienced and suffered by the patient and others cannot fathom the pain we experience.
Ankylosing Spondylitis (AS)is a part of me, and it will be with me for the rest of my life. I was only 26 when the early symptoms struck. I started feeling this occasional pain in my spine and eventually lower back pain, pain in the buttocks area after long periods of sitting down and stiffness in the morning, where I would struggle to get out of bed. Imagine waking up in the morning and being unable to move; and you need to wake up two to three hours earlier than normal people before you can regain some mobility. I feel bad that I can’t get up immediately like normal people do, and I long to be like the people who can get up normally.
A few years after experiencing the early symptoms, the pain continued, and I was hospitalized for a persistent fever. A blood test later revealed that I had a high inflammation marker and after consulting a rheumatologist, I was finally diagnosed with AS last year, about 7 years after the first occurrence of pain.
This is often the case, as many might write off AS in their early years as just another back pain, but it’s more than that. I was devastated and could not accept it at first, mostly because I had no idea what AS was and finding out that there was no cure, it made me feel worse. It’s quite common that AS is misdiagnosed and treated with pain killers, it usually takes patients years before correct diagnosis. If you’re unsure you have AS, check out this website.
My family has a history with an autoimmune disease called Systemic Lupus Erythematosus (SLE) which affected my late mother and sister. I was relieved to know that I had escaped SLE, but unfortunately, I was diagnosed with a whole different autoimmune disease instead.
By profession, I am a social worker at a church, and thankfully I don’t have to be tied down to my desk. Moving around helps ease the pain as AS gets worst when someone is resting. However, people often misunderstand the seriousness of it especially when it is in its early stages.
First symptoms of AS shows in late teens or twenties, and there is this misconception that if a young person complains about back or arthritis pain, people don’t believe them and often think they are just exaggerating or trying to be lazy.
This is not the case, as this pain does not just affect us physically, but there’s an emotional suffering to it as well. The pain can sometimes keep us up at night, making us feel lethargic during the day. However, I am hopeful that with better understanding and awareness of this disease that can change.
I hope that healthcare professionals as well, will recognize this disease early on and not brush it off as just another sport injury, regular back pain, bad posture or even sleeping on a bad mattress. While there is no cure for this disease, there are treatment options available that are also putting AS patients off it.
My brother for example, who has shown similar signs of AS, refuses to get himself checked out as he fears having to pay exorbitant amounts for the treatment and he has a family to support. However, I find that it would be worse for him if he does not arrest the problem early on, as with AS, some patients find it hard to hold on to their jobs.
AS is very much a pain in a patient’s life, I have a passion for hiking and would love to experience the trails and environment around Malaysia. However, I end up being the person who organizes these trips for my friends, while I stay at home to nurse my condition.
I commend the efforts of Arthritis Foundation Malaysia who is going out to help people like me and I hope that going forward, more people, including the government will step up and help us regain some normality in our quality of life.
Tong Yen Yee
Recipient of AFM’s Ankylosing Spondylitis Fund
这是很常见的事情，因为很多人在疼痛初次发作时，误认为是一般的背痛而已，但事实并非如此。刚开始时，我感到很震惊也难以接受这个事实，因为我从来不知道什么是僵直性脊椎炎，也被告知这是无法根治的疾病，这个情况让我感觉更沮丧。僵直性脊椎炎经常被误诊，甚至以服用止痛药来治疗，患者必须在多年以后才会被诊断出患上这个疾病。 如果你不确定自己是否罹患僵直性脊椎炎 ，请浏览这个网站。
我的家人皆有一种自体免疫问题，即系统性红斑狼疮（Systemic Lupus Erythematosus，简称 SLE），它影响了我已故的母亲和我的家人。 我了解系统性红斑狼疮的病症但是我没想过我却被诊断出另外一种截然不同的自体免疫问题，对我而言这是一个难以接受的事实。
唐燕怡（Tong Yen Yee）