I am a Writer for ‘Parkinson’s Road’ global support community.
“Depart from discretion, when it interferes with duty.” – Hannah More.
One of the aspects of being a person with Parkinson’s, that others may not consider, is just how difficult it is to tell others that you have Parkinson’s; particularly those closest to you. For some, the decision to disclose the diagnosis can be an agonising experience. Who to tell? Why tell? Who not to tell? How to tell? Endless evaluation as to the pro’s and the con’s of doing so, or not. For others, it can be straightforward and there are many more who exist somewhere between the two options.
That there is an option at all, is something important. Nobody has a right to know, right? Ah, well maybe your spouse/life-partner? Your parents? Your children? Hmmm…who else do we feel is in that beloved inner-circle that ‘ought to know’? Is that even correct? Do those closest to us have a right to know? Many would say yes but many would argue not. Then, what of duty and responsibility? What of honesty and trust? This can become an ethical minefield of arguments for and against an individual’s right to complete privacy, should they wish it.
So, what goes on in the head of a person with Parkinson’s, that this ethical debate even needs to play out? I can only answer from my own experience, by simply saying that the immediate concern is that of consequence. What happens if I disclose that I have Parkinson’s Disease?
As a co-facilitator of Parkinson’s Road support community on Facebook, I asked about this very question and it was interesting to see just how many people had not told some/all people in their lives that they have Parkinson’s. Additionally, there was also feedback that many people with Parkinson’s just do not know how to explain their illness to those who know little or nothing about it. How do we find the right words? What understanding does the person we are telling actually have, to make sense of this very complex disease, when we with Parkinson’s can often struggle to understand it ourselves? How will people react? What will change once I disclose to somebody?
I could go on with a list of reasons why we might not disclose to anyone at all and certainly why we might only disclose to a select few. Not least of all reasons, is the fear that we may be judged and then treated differently. In particular, this very much seems to be the fear when people consider revealing their diagnosis to an employer. Will I be understood? Will I be supported? Will I be treated badly? Will I be excluded in some way? Will I destroy the opportunities that are otherwise ahead of me based upon my performance, because now I will be seen as impaired or unfit?
There is no clear answer to any of these concerns, considerations and questions. Sorry. If you were thinking that I may be able to offer a pearl of wisdom that just makes it safe and okay to go ahead and disclose, then I cannot. What I can do, however, is tell you what I have done and how it worked for me.
I told everyone. Initially, I spent a few days telling those closest to me, only. I did this in-person where I could and via message online where I could not; in some cases with a phone call as well. I didn’t categorise who I would tell beyond simply my own awareness that those closest to me had been on my journey of trying to find out what was causing my symptoms, for such a long time, that it would simply have been wrong not to tell them. Plus, these people are in my life actively and so know when I am unwell or struggling; so there would be no way of hiding that I have an illness.
Then, in knowing well that some of the people closest to me would be, and will be, affected by my illness and its impact, that it would simply not be right or fair for me to exclude them from knowing my diagnosis. They would need information, and potentially support, too. Then, they may need to get that support from people close to them; such as friends, other family members or work colleagues and so they may need to tell those people. Soon, it felt like revealing to anyone created a domino effect that would lead to, or even require, others to be informed.
For me, the logical thing to do was to simply ‘come out’ as a person with Parkinson’s. I’m a great believer in just naming things and then getting on with it. I am who I am (yes, okay – that was nearly a well known anthem!) and it’s far less complex just to state it and then get on with it, than worry about who I may or may not have told. All of the ‘what if’ scenarios that come with worrying about other people’s reactions; why should I have to carry that worry when having Parkinson’s is enough to contend with, itself? Besides, this was not an unfamiliar scenario to me and I did not want to ever have to live in fear of judgement, ever again, based upon being in some way different.
Once those closest to me were made aware, I put a post on Facebook and simply announced my diagnosis to everyone else. That was it. Job done. Anyone not connected with me on social media soon came to hear the news, via word of mouth, from those who were.
There have been many different types of reactions. Nobody has been unkind and for that I am grateful. Some people do comment on the fact that I am so open about having Parkinson’s but they may not know the part of me that believes that by being ‘out’, you can give others strength to be open, too, and that by talking we can educate, break down taboos and make society safer, more understanding and more compassionate by doing so.
I talk about Parkinson’s sometimes, to help raise awareness. I write and I blog about Parkinson’s, for the same reason and because I hold a role in which writing about Parkinson’s is a part and I co-facilitate a global support group for people with Parkinson’s, and caregivers, because I have the skills and the insight to do so and it is a way to contribute something to people who may be in greater difficulty than myself.
I found that, once I accepted that I have a disease which has no cure and which will only get worse, that there was no way of getting away from the fact that this is a significant part of my identity now and that it always will be. It does not define who I am, but it is a significant part of who I am. If anyone truly wants to know me, then they have to know the Parkinson’s, for it affects most aspects of my life. I only want relationships that are meaningful and so this aspect of who I am has to be known, for any relationship to be meaningful; for like I say, it affects my life in so many ways.
What is the point I am making in this Blog post, I hear you ask? Well, my point is that we do have to be brave and ready, to be able to disclose that we have Parkinson’s Disease. In my experience, the benefits of being ‘out’ about it are far greater than the potential consequences – but that is just my own experience and you each have to judge for yourself.
I would add one thing. If people care for you, I mean truly care, then they will want to be a supportive part of your life and they will want to understand the real and full you. If you decide not to tell someone that you have Parkinson’s, you are making a decision for them. By doing so, you are potentially denying them the opportunity to be the support to you that they would want to be and to have the insight into you that makes the relationship meaningful at all. Eventually, without the meaningfulness, would that relationship gradually become distant? I think we do have a duty to our relationships, to give that opportunity to those who we are in a meaningful relationship with.
It is a risk. I would, however, say that not disclosing to those in your life that you have Parkinson’s is also a risk.
(C) Dean Parsons. June 2018.