People with Parkinson’s often report feeling stigmatized, particularly by some of the more external symptoms of the disease, such as tremors and slurred speech.
Being accused of drunkenness, being overlooked for promotions at work or being perceived to have a mental illness are all common occurrences for people living with the disease.
We Have Parkinson’s feels it is time to take a stand and remove the stigma. We are starting with our top 3 reasons why you should never be sorry for having Parkinson’s:
- You are not drunk, you have Parkinson’s disease
So what if people think you are a drunk. You are NOT drunk, you have Parkinson’s disease. Now I know this is much easier to say in theory, than in practice. If like me you don’t particularly relish the thought of wearing a t-shirt emblazoned with the slogan “I am not drunk, I have Parkinson’s disease”, then you can always politely inform the person in the street who is staring at you or moving their child out of your path. Or, the other option is to just ignore them, safe in the knowledge that you know you aren’t drunk and it really should not matter what other people think.
- Hiding your illness is stressful, which is a well known trigger for symptoms
It is a sad fact that many people with Parkinson’s disease feel the need to keep their illness a secret. This is a fascinating, and saddening, blog from a neuroscientist, who was diagnosed with Parkinson’s disease but decided to keep it secret for fear his career would be affected. This is a recurring theme in the many articles and first hand accounts I read as research for this blog. Like the neuroscientist who sits on his hands to hides his tremors or the CBS news correspondent who blamed his poor handwriting on a broken wrist, many people living with Parkinson’s report feeling a huge weight lifted once they reveal the disease to their family and friends.
- People who keep their illness secret are unlikely to take part in vital research
Scientists investigating the cause of Parkinson’s disease often report difficulties in recruiting patients to their studies. One of the theories for the problems with recruitment is that people with Parkinson’s disease often keep it secret, some for many years.
If you are trying to keep your disease a secret it becomes virtually impossible to take part in research trials, as people often try to avoid medical settings for fear of being caught out. However, with high profile people, such as Michael J. Fox, living very publicly with the disease, it is hoped the stigma will reduce and fewer people will feel the need to live a double life.
[1] accessed July 2015 http://well.blogs.nytimes.com/2012/07/09/keeping-parkinsons-disease-a-secret/?_r=0
http://wehaveparkinsonsblog.com/advice/3-reasons-you-should-never-be-sorry-for-parkinsons/
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