My Deception
It’s early December in 2016, about six weeks after my Parkinson’s diagnosis. My cell phone rings, and when I answer it my mother wastes no time before telling me why she has called.
“I just got a call from a doctor’s office in Houston. They wanted to confirm an upcoming appointment with Allan Cole,” she says.
“Hmm,” I say, hoping to seem calm as my heart tries to leap out of my body.
“I thought it was strange, and I wanted to make sure you’re OK,” she says.
“Uh, I’m fine, Mom…but what exactly did they say?”
“They said they were calling to confirm an appointment with Allan Cole, and I told the woman who called she must be looking for a different Allan Cole (note that my father and I have the same name), as we live in North Carolina; then she apologized for having the wrong number, and that was it. I don’t remember the doctor’s name, or even if she said it, but they were in Houston, which seemed strange, and I started to worry that they might be calling for you.”
“I’m sorry you were concerned, Mom, but I don’t know anything about it…Occasionally, I get calls, too…from people looking for a different Allan Cole. Usually, debt collectors. I guess there are a few of us out there.”
My heart aches.
“I just wanted to make sure you’re OK,” she says.
I tell her not to worry, and, again, that I’m fine. Then I change the subject.
As soon as I get off the phone with her, I dial the office of a neurologist I am scheduled to see in a few weeks, to investigate whether someone from his office has mistakenly called my parents’ home, though this scenario makes no sense. When the receptionist answers, I tell her that I’m calling to confirm my appointment, but also to make sure they have the correct phone number for me. She confirms the appointment and asks me my number, which matches what they have on file.
“And that’s the only number you have for me, correct?”
“Yes, that’s the only number we have,” she says. “Would you like to provide an additional one?”
“No, thank you,” I say.
And that was that.
To this day, I do not know whom my mother spoke with, what doctor’s office called her, how they got my parents’ phone number, or why they called.
I do know that I lied to my mother about my condition, and that doing so proved painful.
Keeping it Close
Several people I know keep their Parkinson’s diagnosis private. Perhaps a spouse, partner, children, or one or two close friends know they have Parkinson’s, but no one else does. In some cases, it requires a great deal of effort to keep it this way as they camouflage or explain away their symptoms.
I can relate to those who choose this path; I followed it myself for nearly a year after my own diagnosis.
There are good reasons to keep a diagnosis private. After all, Parkinson’s comes with many misperceptions, naivety, as well as flat-out wrong assumptions about what it will mean for a person’s future.
A few weeks after I shared my diagnosis publically—which I did in an op-ed on health care reforms—I had lunch with a former colleague who compassionately told me how sorry he was to learn I have Alzheimer’s disease. It was clearly a slip of the tongue and he blushed. He apologized profusely, turned even redder, and laughed with embarrassment before changing the subject. He knows the difference between Alzheimer’s and Parkinson’s, but, as I would learn, not everyone does and there would be opportunities for education.
Even if they know the differences between Alzheimer’s and Parkinson’s, when people know we have it they can begin to view us differently, even though they might not be aware of it. We can become objects of their pity, or they might feel less comfortable in our presence because they do not know what to say. Parkinson’s can be a conversation stopper, no doubt.
Others’ discomfort with our condition also may result in their becoming more distant, emotionally if not physically, such that we feel less included in their lives and lose access to them. In a similar vein, we may receive fewer invitations in both our social and professional circles. With respect to the latter, remember, too, that some of us who keep quiet about our Parkinson’s are still working. We fear that supervisors or coworkers knowing of our condition will prompt them to assume we are less able to do our jobs, even if our performance has not changed, and even when given appropriate accommodations required by law.
I feared all of this and more; and, with one or two exceptions, none of it has happened.
Putting It Out There
On the other hand, living so cautiously, if not secretively, carries its own risks.
I felt disingenuous while carrying my secret, as if I was cheating on people I care about as well as being unfaithful to myself. I also felt a strong desire to use my situation for doing something constructive, such as raising awareness, providing education, and fundraising for Parkinson’s organizations, as well as advocacy for more humane policies pertaining to health care and disability. I imagined feeling empowered by these efforts, buoyed by joining with others in solidarity, and, as a result, living with more purpose and hope.
However, doing any of this required being public with my disease, which I kept resisting.
As many secrets do, it weighed on me. A lot. Eventually, the secret wielded power that prevented me from living the kind of life I wanted to live.
Things to Consider
Few decisions feel more personal or crucial than deciding whether to disclose a serious medical condition. Many factors come into play when making this decision, and there is never a one-size-fits-all approach or outcome. Each of us must plot our own path.
Of course, the nature of having Parkinson’s is such that, eventually, there comes a time when hiding it is no longer possible. Symptoms will have their say. Still, here are a few things to consider when discerning whether, when, and how to tell others about your condition.
What will you gain by being public?
Rather than focusing first on risks or potential losses, ask yourself what you expect to gain. What can you do once you are public that you cannot do now? Perhaps you will get more involved in Parkinson’s-related activities or causes. Maybe you will become part of a support group or exercise community and enjoy their benefits. Perhaps you will reset personal priorities in ways that bring you added meaning and purpose, excitement and joy. Maybe you will feel less anxious, and more authentic and free, once you stop hiding or camouflaging your symptoms, or, as I did, lying about your status. As Toni Morrison put it in her book, Song of Solomon: “You wanna fly, you got to give up the #%*+ that weighs you down.”[1]
What will you risk losing or giving-up?
Nevertheless, disclosure usually comes with losses, too; or at least with the risk of loss. I have already mentioned some of these potential losses, including a loss of status or standing, whether professionally or socially, as people’s misassumptions and naivety about Parkinson’s lead to treating you differently or in ways that hurt. Though relatively rare, I hope, some in our community report having experienced this kind of treatment. Either way, once others identify you as a person with Parkinson’s, it is unlikely you will ever be able to live completely beyond that identity. You will give-up your status as a healthy person. You might give up opportunties to advance in your career as well, or to change employers because you worry about the implications for health insurance.
If you are still working, have you consulted with an employment attorney?
Which brings me to a practical matter: I urge you to meet with an employment attorney prior to going public with your disease; in fact, it should be part of the discernment process. You will benefit from knowing your rights as well as your employer’s responsibilities if you run into problematic responses. You want to make the most informed decisions you can with respect to living publically with Parkinson’s, including at work; the law is on your side with respect to your job, and knowing as much as possible about that can provide a measure of comfort and security.
No Regrets
I do not regret telling others about my having Parkinson’s disease. I am fortunate to have a supportive spouse, family, friends, colleagues, and community, and their encouragement buoys me regularly and helps me integrate Parkinson’s losses and gains in my life. And most of what I feared has not come to pass.
A part of me wishes I had shared my news even sooner.
It was a long, lonely, difficult first year of silence.
It feels much better not to live so weighed down.
And to tell my truth.
__________
[1] Toni Morrison, Song of Solomon (New York: Vintage, 1977), 179.
Photo by Mohamed Nohassi on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin and, by courtesy, professor of psychiatry in the Dell Medical School. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter: @PDWise