Having an incurable and unpredictable illness is never going to be a bundle of fun and the thought of taking medication for the rest of one’s life doesn’t do anything to alleviate the situation. Therefore we must take solace wherever we can find it.
Let me set the scene for you; every 4 weeks I present myself at the local hospital. I get a cannula inserted followed by an intravenous drip which takes about an hour. That is followed by another hour of observation by the medical staff to be certain I have not suffered any adverse reaction and then I am off home again. This is repeated every 4 weeks and usually the same staff are present. The only comparison I can make is that it is like going into your ‘local’ and the staff greet you by name and ‘the usual Dec’. You know them and they know you; not friends in the strict sense of the word but acquaintances nonetheless. The other people getting infused fall into the same category. We exchange news and small talk over the 2 hours and then take our leave – really the local pub is a good analogy.
It was suggested that I change my medication and as a result I would no longer need to have an infusion every 4 weeks. The final decision was mine and it was not difficult to make as I was changing to a one-a-day tablet which is much easier to handle but I didn’t think I would miss the monthly trip and the associated banter and chatter as much as I did initially. I don’t think the social interaction made the drugs work any better but I certainly looked forward to meeting my new friends every 4 weeks and having something to look forward to is good. Someone told me that there is anecdotal evidence of the positive social aspect of medication and that it has also been noticed in clinical trials but I failed to find any references.
As I began to consider the impact of social contact and medication I have come to believe that there is a connection. Evidence supporting my theory in relation to MS is non-existent but on the basis that my theory fits other illnesses I researched and found an article that may bolster my theory. In a review of a number of articles, Mary P Gallant concludes that the studies provide evidence for a modest positive relationship between social support and chronic illness self-management.
Social media can play a huge part in the social aspect of medication. Facebook has a number of groups where medication or the non-use of medication is discussed; Overcoming MS has 2,219 members on Facebook – this group is largely concerned with dietary issues whilst the Gilenya Group has 3,518 members where issues regarding that particular medication are discussed. ‘This is MS’ forum is a general forum where a lot of different medications are regularly discussed.
I miss the social interaction at my ‘infusion local’ to a certain extent but not enough to change from my one-a-day tablet. There are a number of outlets available for general social interaction between people living with MS and this will be the subject of another blog!
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