Yesterday afternoon, I was invited by my colleague from Hospital Ampang to participate in a public forum on Multiple Myeloma. Apart from myself, they invites a Nurse from Dana-Faber Cancer Center in Boston to address the questions from the partiipant about living and coping with the disease.
The session started out with a short talk on myeloma by yours truly all in Malay. We then took question from the public ad that went on for a good half hour. At the end we discussed about the need for a patient support group that were pretty common abroad. It looked that there were some interested party in there. Hopefully something will come out of it similar to the MaxFamily for CML.
We highlighted that part of the reason why cancer parietal support group were not very strongly supported here was the fact there there was stigma attached to the diagnosis of cancer in out society. Patient once labelled as having cancer often felt shame and wondered if it was punishment from God. Worst so, this view was reinforced by the people around them. These people ended up retreating into a shell and suffered by themselves.
I was pretty certain that part of challenge would be to chance the patients perception of their disease, overcome the stigma, empower them and make them confident. Only after the inner battle were address, they can start changing te public perception of their predicament. The problem also held true for other non-cancer conditions such as lupus and multiple sclerosis. Even diabetes support groups locally struggled atthe beginning. I guess we Malaysian still have perception that having any disease was a direct consequence of punishment from God, be it cancer, lupus, diabetes. Even my Mum-in-law once said that when she was bringing up her children re my wife, they never had fever until they attended school. Since out children were both asthmatics, bearing in mind that Irfan was just discharged from hospital, the infections that they regularly picked up were due to us not looking after them properly, and even due to us 'tak buat baik' to other people. I realised that those statements should be taken with a pinch of salt, the point I was making was generally we Malaysian were wary to people having illness and all illness must always have a reason behind them.
Frustrating I know but those were one of main hurdles we had to jump in order to make any support group successful. Over the years in Malaysia, I was involved at helping up the beginning of support group for Immune Thrombocytopenic Purpura (ITP), Chronic Myeloid Leukaemia (CML), lymphoma and now myeloma. So far, only the CML group really took off. It helps when most of the members were youg and relatively fit and vocal. I would be happy if the myeloma was half as successful as their CML counterparts.