Maria De Leon, M.D.
I have been dealing with Parkinson’s disease patients and their families for 25 years. During this time, I have seen many great changes in the science of Parkinson’s and great strides have been made in improving the quality of life of those who suffer this illness yet despite all the advances one thing that continues to plague my mind is the stigma many of us who live with PD continue to face on a daily basis.
Many of my previous patients and newly diagnosed friends continue to hide behind a cloak of invisibility for fear of being ousted, made fun of, or ostracized in public. This fear can be more freighting when you live in a small community as I do. Having a tremor or experiencing gait difficulty may suggest to someone that you are anxious or nervous or even inebriated. I have had to write letters and defend patients who were accused of DUI’s due to their neurological illness one time too many. While speech impediments that accompany PD may falsely convey to someone, who is unaware of the condition, a possibility of intellectual disability. Well, no wonder going out in public can be terrifying for many of us and prefer to hide in the safety of our homes where our intellects are not questioned!
Although our motor symptoms can invite a lot of open stares our invisible non motor symptoms like our depression, memory loss, bladder problems, can be even more challenging and bring forth a lot more harsh judgment from others if we try to hide our disease from others who won’t understand why we keep forgetting things or having to go to the bathroom a million times. Instead they might formulate erroneous thoughts like we are not very competent.
Sometimes, even well meaning people can contribute to the stigma by making comments like you have PDF and you are able to do that!
Sometimes, even well meaning people can contribute to the stigma by making comments like you have PDF and you are able to do that!
You are UNBELIEVABLE!
Sometimes, people can be cruel to the point of singling out someone out repeatedly, otherwise known as bullying. These individuals will mimic the impediments of the chronically ill, such as PD persons, to the point of causing PTSD (post-traumatic-stress -disorder) in some of those individual’s.
I have personally witnessed bullying in the nursing homes and assisted living communities where the more able pick on the less able in scenarios that play out like a movie scene from “Mean Girls.” Unfortunately, my experience with bullying has been at times more personal than that. I, too, have experienced firsthand the staring, pointing, and negative comments of those around me when I have found myself unable to ambulate without use of a walker or cane. These types of negative commentaries and reactions were extremely upsetting to my young daughter which in turn made me sad for the fact that she had to witness such cruelty.
It did not bother me they were poking fun of me rather that they made her feel bad which made me mad for the ignorance that led to this behavior. I was not ashamed of having PD but suddenly felt bad for all the neurologically ill persons who have to deal with this on a daily basis. I realized and explained to my daughter that their comments and attitude were more about them than about me and my illnesses since they were willing to expand so much energy on a stranger.
Since a lot of the time, cruelty and bullying come from ignorance, lack of knowledge, and understanding. Therefore, it is important that we educate others about our disease. But in order to do this effectively and efficiently, we ourselves should not be ashamed to have the illness or be disabled, or shaky or slow. Embrace your illness and teach others about what it is like to live with PD; by doing so you will be empowered. How do we expect others to understand us, be compassionate, or have empathy when we ourselves are ashamed?
The stress caused by the stigma of the disease can exacerbate our underlying neurological disease. So YES, you are bound to shake even more as you step out in public as you fear the scrutiny of those around wondering why that slow, crazy old lady just can’t be still or walk faster?
How do we deal with this?
Counter the culture:
Dr. Corrigan says that “self -stigma is an egregious impact of stigma in general, a diminished sense of self esteem leading to a ” why- try ” attitude in many people.” We need to put the power back in the hands of those suffering with the illness- you the patient!
The first thing you have to do is be kind to your own self- less critical of your impediments. A lot of times in my experience is our mental image of ourselves that gets in the way. Others may not even notice a problem. other times, people are scared by brain diseases simply because the brain still remains a mystery and symbolizes the epitome of ones being. Others are scared about what they heard which in my opinion usually is a lot of myth with little bit of facts. It is up to us who suffer with the disease to set the record straight and educate our neighbors, friends, and people in our communities.
A Rehabilation Professor at NYU Langone Medical Center urges individuals to let go of their biases and learn more about their illnesses, “this allows the person to maintain an active role in society and, ultimately, a sense of dignity, ” she says. Which is what I encourage all my patients and friends to do.
From experience I know that
- Patients are the best people to advise and educate others about their illness; that breaking down barriers starts with the individual letting down his or her guard and letting others in. Once you are willing to be vulnerable and let others know you have PD, you will find that a person’s attitude will change from skepticism to total support or PD champion.
- Thus, not only do I teach about PD to health professionals and lay people alike but I also teach regarding the perils of adult bullying in the community as it pertains to chronic neurological illnesses like PD. Meantime emphasizing that in the elderly- aggression and bullying can be the initial presentation of a neurological disease such as PD itself.
- So let’s all do our part and turn staring and whispering into caring and PD supporters.
Sources: Stephens, s. ( February/ March 2015): ” Overcoming the stigma: turning staring into caring.” Neurology Now. 34-38.
Parkinson’s disease: the basics – bit.ly/basics-PD
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Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; http://www.aan.org, http://www.defeatparkinsons.blogspot.com All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at deleonenterprises3@@yahoo.com contributor http://www.assisted-living-directory.com Contributor http://www.lavozbrazoriacounty.com
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