When I was diagnosed in 2013, I made the decision to keep the news to myself and a few others. However, last year I accidentally outed myself my posting on a page that I thought was private, but was actually public.
Within minutes of this post hitting other people’s newsfeeds I was inundated with messages of shock, sympathy and grief, but things changed rather quickly. Suddenly, people were sending me websites that offered alternative treatment to the NHS, news articles about how the sweetners in soft drinks could be causing the MS and diets that could cure me.
I read the first few offerings as gospel, particularly the one that told me Diet Coke could be causing me to have symptoms that mimicked the MS. It seemed that everywhere I turned there was something I was consuming that was causing me to be sick, which really meant I was doing it to myself.
However, my neuro dispelled every article I showed him, advising me that this would happen a lot as people wanted to help and researching MS was there way of showing they cared. I understood this, I really did, but there was one message that was abundantly clear: people think you are making yourself ill.
Now, I don’t want you to think that I believe my friends and family (and people I haven’t spoken to in years but still felt that they needed to tell me on Facebook how shocked they were at my diagnosis) think I’ve done this to myself. Deep down, most people are decent human beings and when you tell them bad news there instinct is to fix it. They only have two things to go on: they know you and they know you’re sick, which means they’re bound to deduce that you have something to do with it.
One of my very close friends was very ill for a long time and was eventually diagnosed with ulcerative colitis. Before a doctor gave her problem a name, people often told her it must be something that she’s eating, not because they believed she was purposely making herself ill, but because they wanted it to stop.
If you’re new to MS or a veteran, you can expect to be told by friends and family about a cure-all diet, supplement or that Diet Coke is the problem. Just smile politely and tell them that you’ll speak to your neuro about it, that way no one’s feelings are hurt.
Also, if someone sends you a link that hasn’t come from the NHS, MS Society, MS Trust or something similar, it’s probably not worth looking at.
Now, go get yourself a can of pop and raise it in defiance!