If I had a penny for every time someone has given me advice, by now I would be a very wealthy woman! Often advice comes from people with no medical training or personal experience with the disease you are suffering from. Although well-meant and with the best intentions at heart, advice like this drives me crazy. I’m sure I’m not alone, and many people suffering chronic ill health have to put up with receiving a gamut of advice, some of which is totally inappropriate and occasionally just downright dangerous.
Knowing when to filter out such advice is easy: if they don’t suffer themselves or are a caregiver of someone with the same disease as yourself, a qualified doctor or recognized support group / organization specializing in your particular illness – let their advice go in one ear and out the other. On occasion, to satisfy the person’s intentions of their goodhearted advice, I check out thoroughly, researching with the help of the Internet and sometimes conferring with a specialist in Gaucher or Parkinson’s. Some of the advice or suggestions that have been made to me over the years have been amazing (and I don’t mean in a good way!)
However I would like to mention that sending a link to a newspaper article that is pertinent to someone’s disease, with information of new discoveries, medical trials or findings, is welcomed and received in a positive light, giving a feeling of hope.
A healthy person cannot imagine what it is like to literally battle each day against the symptoms of chronic disease, and in my case I’m battling two diseases. I sometimes feel a little outnumbered, but like David and Goliath, we all know who wins!
We are nearing the end of Gaucher Awareness Month, but being aware should be continual and not restricted to merely one month a year. I have written about how traditional medicine and alternative medicine can work side by side and invite you to take a look at my article this week in The Huffington Post.