Obviously, this doesn’t apply to me, because I’ve been telling nearly everybody, including you, dear reader, but it isn’t surprising that many people don’t want to talk about having Parkinson’s. According to a New York Times “Well” blog post:
Doctors and researchers say it’s not uncommon for people with Parkinson’s to conceal their diagnoses, often for years.
– Kate Yandell, “Keeping Parkinson’s Disease a Secret”
The post has evidently been prompted by the revelation by American TV Journalist Bill Geist that he’d been living with the condition for ten years. It seems that his veil of secrecy didn’t work as well as he’d suspected – a fair number of commenters on the post state that they had spotted the symptoms in his appearances on television. However, these are people who aware of the more subtle symptoms; the less well-informed were, I imagine completely oblivious. Geist is older than Michael J. Fox (and arguably less famous), but parallels can be drawn; Fox, too kept his diagnosis a secret for many years.
Why are people so reluctant to reveal that they have Parkinson’s?
One reason that is mentioned is denial. If you don’t tell anyone, it might not be true. It might go away. You know it is true (well, probably; there have been cases of misdiagnosis). You know it won’t go away. But talking about it makes it more real.
In my experience, talking about it also helps you to accept it and to move on.
Another reason cited is concern about their career. One man, a consultant,drew a link between his openness and a loss of earnings:
He began to tell prospective clients after one inquired about his health [… and then …] he began to see a drop in new business. “They don’t need extra reasons to say no,” he said.
But others found that people were more supportive than they expected (a doctor talks about how well her patients reacted). Of course, a doctor – whose clients inevitably know what it is like to be ill – and a consultant working freelance (the article doesn’t say, but my imagination has placed the gentleman concerned in a technical role) are entirely different propositions.
The blog post talks about the stress of concealing the diagnosis. Being told that you have Parkinson’s is stressful. I found that sharing the news helped relieve the stress, a bit like releasing the steam from a kettle. Keeping the secret – after a while, it would become a habit – as your symptoms increase would become harder and harder, and the subsequent stress would be worse, too. I think it may be harder to discuss, too, if you are younger, and have a career and/or a young family.
Research is impacted by this secrecy; many programmes seek to recruit people with new diagnoses who are not taking any drugs. I started on rasagiline fairly quickly (and wasn’t aware of this common research requirement until after I’d started the drugs); I can’t help but wonder how long a window of non-treatment there actually is.
But when people do break cover, they often launch themselves into research programmes or fundraising, in apparent compensation for their previous inaction.
The comments on the New York Times blog post are interesting; many people recount how they wished that they had revealed their secret earlier (one man’s marriage broke up as a result of his secrecy); others talk about the stigma of such a condition, or the pity that they don’t wish to be the subject of. the consensus seems to be that keeping the secret from those closest to you is not worth the stress – and that, in most cases, the more open you can be, the better you will fare. Of course, it’s a difficult topic to broach; but I would say that, once it’s out in the open – and the sooner it’s out in the open – the better.
I haven’t noticed any difference in the way that most people treat me. Naturally, people express pity, shock, sympathy – but then they realise that I’m still the same person, and that nothing has really changed. It’s not as though the layperson can really tell that there’s anything wrong with me at the moment. I hope that, by telling people now, I will have prepared the way for the future. When it will be more obvious.