Mdm Ding Mee Hong
Age : 60 years with Rheumatoid Arthritis (RA) since age 21
Surviving with RA for the last almost 40 years is a tough journey with continuous challenge in both physical and mental health.
Way back when I was 21 years old, not only I miss those interesting years of young adult life but I was ridden with so much pain on my badly inflamed joints. Seeking treatments all over was such normal thing. I was initially diagnosed with RA but I have no understanding what RA is leaving alone the knowledge of who is a Rheumatologist whom I never heard of. Internet was never heard and computer was an exclusive thingy. The understanding of RA was “fongsap” or “sakit angin”.
I was in so much of pain and moving around is a huge task. Waking up in the morning without having to cry is like seeing a blue moon. In such a desperate state, I never reconsider any recommendations where to seek treatment, whatever so claimed cure and whomsoever advice, I will just go or swallow whatever people claimed is good and can cure RA. I ended up going to Bomohs, Mediums, backstreet medicine peddlers, masseurs and ended up intoxicated by unknown amount of unknown “steroid”.
I was prescribed with unknown crushed “herbs” and was like drinking a bowl of brown slimy mud. It tasted horrible that it caused me to vomit a few times and need to collect it in a bowl and drink back whatever I have vomited thinking that it will cure my RA and on the other hand the “herbs” is extremely costly.
Through the blind journey, my RA advanced and have damaged most of my joints and I have only found a Rheumatologist about 10 years later into my journey. The deformities and damages on the joints were bad enough thus I was advised to have those joints replaced. Contemplating and fear had taken up another couple of years before I surrender to the pain and decided to go ahead with the joint replacements.
My first Total Knee Replacement was done in 1994 and I continued with replacements of my other knee and both Total Hips within 3 years. I had revised replacements for both hips in 2015 and 2016. Both my artificial knees are still serving me well till today.
Life changed thereafter the replacements and most importantly I started to gain back my interest to continue what I wanted to do before RA attacked me. Although there is still minor pain on other joints but I responded well to RA treatment so RA was under control and I have taken off painkiller after relying on them for almost 15 years.
I joined Arthritis Foundation Malaysia (AFM) and helped to initiate the RA Support Group, then was the time, is the turning point when my mental health was strengthened as my passion started to grow as I participate. My RA went into a remission thus have motivated me further which I can proudly say I am more able than the able bodies despite being so challenged physically.
Most importantly one must seek the correct doctor and the correct treatment. Understanding what is RA is as important so that one will not be misled when one is desperate and in confused state of mind. If you feel there is a symptom or a “red flag”, get yourself diagnosed by a Rheumatologist and start treatment without wasting time. Remember RA is not only a painful auto immune disease but it is a crippling disease too when your joints are deformed and damaged by RA activities.
Lastly, we need AFM as our platform for our voice to be heard, a place where we can update ourselves with more understanding of the disease and to get information for latest treatments available and gather us to support one another, to strengthen our mental health and to live with RA. Many faced with financial constraints on the cost of treatments and some are also facing social issues, domestic issues and other physical challenged difficulties and we hope AFM can lead us to reach the higher authorities to assist us and to create more awareness of the disease.
Ding Mee Hong
22nd November 2022