‘Sick’ is a word that gets tossed around fairly often when referring to people who are suffering from different types of disease, and while this word might be fitting for those that have come down with some sort of passing condition (flu, chicken pox, etc.), it might not be very appropriate when used to refer to those who are struggling with terminal and lifelong conditions, according to health campaigner Alexander Reed.
Reed, who received his formal Parkinson’s diagnosis almost a decade ago, is an avid advocate of the statement that those who suffer from this condition are not ‘sick’, strictly speaking.
In an interview conducted to Reed, and featured on Parkinson’s Life, we are presented with opinions from both supporters and antagonists, as well as the insights of Reed himself, as he elaborates on his strict belief that Parkinson’s patients should not be treated as sick or ill individuals.
The first part of the interview is wholly dedicated to those who dissent with Reed’s statement, and it focuses on the controversy caused by the advocate’s beliefs in the Parkinson’s community. Reed, who is the founder of the European Parkinson Therapy Centre, has been personally involved with both his condition, as well as those of thousands of other Parkinson’s patients in Europe that seek out his facility in search of respite from the disease. Nevertheless, his statement was widely received with a negative response from the general community, as they believe that his words belittle the situation in which the average Parkinson’s patient struggle with on a daily basis.
One of such notable voices was of one Ian Frizell, a health campaigner who, unfortunately, received his diagnosis of early-onset Parkinson’s in 2011. Frizell vehemently proclaimed, as a response to Reed’s statement, that “Parkinson’s has taken my career, and my ability to provide for myself and my family. I am absolutely sick.”
On a similar note, a Parkinson’s Life reader under the username ‘Chris DeAngeloWX5CJD’, strongly voiced his opposition to Reed by branding his statements as ‘preposterous’, and that his condition is a neurodegenerative disease and not some common cold, calling it otherwise would be a blatant mockery of him, and of all that are struggling with Parkinson’s. Furthermore, the community, in general, in agreement with Chris’ statement, expressed that Reed’s proclamation only serves to belittle their plight and contribute to misinform the general populace on how Parkinson’s affects the patient, contributing to its dismissal as something akin to a common cold, or other passing conditions.
In stark contrast to Reed’s belief, Tonya Walker, a blogger that regularly posts on Parkinson’s Life, expressed that, based on the dictionary’s definition of the term ‘sickness’, those who suffer from Parkinson’s are indeed sick. Furthermore, she states that those who are afflicted with it struggle on a daily basis with symptoms that could be attributed to a sickness. From an empirical standpoint, she also said that, as a person that has been suffering from signs and symptoms for many years, she doesn’t feel very healthy.
In a better light, the chair of neurology at the University of Florida, Dr. Michael Okun, shared the sentiment with those who felt alienated by Reed’s statements. Nevertheless, he also firmly voiced his belief that those who suffer from Parkinson’s have the right to brand themselves in whichever light they want, whether they feel as sick individuals, or healthy people who must adapt to their own particularities. He claimed that, while referring to themselves as ‘sick’ might help some to ground themselves in reality, for others, considering themselves as healthy might help to nurture a positive outlook of their condition and to help them to better deal with their disease.
Nevertheless, not all the response was bad when it comes to Reed’s statements. Some users shared the sentiment with Dr. Okun, as they strongly believe that a positive outlook is paramount for dealing with Parkinson’s disease in a healthy and effective manner. Even if they are struggling with symptoms on a daily basis, the belief that they are not actually ‘sick’ can benefit their condition, and create a psychological aegis to guard them against the negativity that stems from their diagnosis.
Like Dr. Okun, Reed expressed that those who suffer from Parkinson’s disease have a choice when it comes to dealing with their condition, and although he personally doesn’t consider it as a sickness, he doesn’t want to undermine the opinions of others that are struggling with Parkinson’s disease on a daily basis. For many Parkinson’s patients, especially those diagnosed with early-onset variations of the disease, the term ‘ill’ or ‘sick’ comes with very negative connotations, which widely define the way in which they must deal with their condition in the future.
Kim Petrie, who was diagnosed with early-onset Parkinson’s at age 45, firmly states that Parkinson’s is not a disease, nor a death sentence; it is something that she must stand up to with a positive attitude and an unerring willingness to keep going forward despite the hardships. Regarding herself as ‘sick’ would completely undermine her efforts, and would only make her want to stay in bed all day, suffering.
In the aftermath of the controversy caused by Reed’s statements, Parkinson’s Life hosted a public poll on Twitter, where they asked whether Parkinson’s should be considered as a sickness, or simply as a condition. To a great surprise, and despite the loud statements of those that voiced negative opinions, a staggering 73% of polled people voted that Parkinson’s should not be considered as a sickness, only as a condition.
As a closing statement, Reed firmly reiterated that those who receive their Parkinson’s diagnosis have a choice of whether to consider themselves as the victims or the protagonists of their own story. The way that patients perceive their own condition will greatly influence how they will act when the going gets tough. Furthermore, he states that if a patient will have to cope with symptoms of a daily basis, the healthier alternative will be to deal with them with a positive outlook, instead of a wholly negative overview on their own condition.