Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

The diagnosis that dare not speak its name

7 Comments

Zippy, with apologies to the TV programme RainbowObviously, 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.
ibid

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.

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7 thoughts on “The diagnosis that dare not speak its name

  1. I think there might be a fear too that you could become defined by your illness in some people’s eyes. I recall a friend who had a stigmatising disease didn’t want everyone to look at him and see his illness not him, if it’s something you can ‘pass’ for normal with, I suppose I can see the temptation not to tell.

    I think your open approach takes bravery, but works well, as you say then you can move on. I know that I’m rubbish at concealing things, so it would be wiser for me to tell everyone if I were in such a situation.

    • I agree, Beth; I don’t want to be “the woman with Parkinson’s”. I don’t like to tell people unless I know them reasonaby well (this blog is different – if you’re here, it’s likely that you’ve come looking for information on Parkinson’s. Or you already know me). And I don’t tell people unless something relevant comes up.

      Most people at work don’t know at the moment, for example. I’ve been there 2 months, and nothing has cropped up to make it worth mentioning (no issues encountered, no prizes won, no sponsored walks for Parkinson’s UK…).

  2. At diagnosis (nearly 3 years ago), my symptoms were fairly minor (still are; not yet on meds but considering Selegiline), and it wasn’t so much wanting to hide it as just not feeling the need to tell people. As and when it seemed appropriate I told some people but asked them to keep it quiet, and as the numbers grew and I got no bad results at all, I just decided to be completely open – not that it is the first thing I say! Still not had a negative consequence.

    • Thats good, Paul – both that you’re 3 years in with no meds (psst! Wanna do a trial?), and that you’ve had no negative consequences.

      I didn’t bother telling people to keep it quiet. With the consequence that, at least once, I told someone who already knew! (And it wasn’t that I’d told her and forgotten.)

  3. I was misdiagnosed with MS for 7 years so was med free all that time. By the time I started sinemet I could barely function. I’m still afraid of taking agonists as I am a single mum of twin boys and the lack of sleep, narcolepsy and possible compulsive behaviour would be intolerable and make parenting even harder than it already is. I’m not particularly open about my diagnosis (ie I don’t post stuff on Facebook about it) but obviously I tell people when they ask me if I’ve hurt my leg – the most common question I am asked.

    • Hi, Trixedee.
      It’s a difficult one. Or a difficult two – the agonist question and the talking about it question.

      I actually went against my consultant’s advice when I started on agonists, but I don’t think I am suffering from any of the adverse effects (the compulsive effects are apparently more likely for the younger patient). My PD nurse thought agonists were worth trying. She suggested that the compulsive behaviour was likely to emphasise an existing character trait rather than introduce a new one. I reckoned I was low risk, having no interest in gambling, little in shopping, and no addictions. Maybe I’m a little more inclined to make time for painting – but as my (new) consultant said, there are worse things to be compelled torwards. My take on the painting thing is that I’m making up for lost time – the painting time lost when my children were small, and the time I won’t have in the future.

      As for talking about it – I made a big announcement on Facebook just before I asked for sponsorship for a walk for Parkinson’s UK. Since then, I link to most of the BWP blog posts but otherwise ignore it.

    • How old are your sons, Trixedee? Have you told them?

      My children – currently 8 and 5 – both know, and are not averse to sharing their knowledge. I get the impression that the entire school staff know.

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