People, Not Patients! I have always hated the term patient. I realized why this evening.
Living with Parkinson’s Disease (PD) has been a real journey of discovery for me. I had the privilege of speaking to someone this evening (about 5 mins ago) about PD. It is someone who approached me after reading my blog, and we had a great chat. Something about it really struck a chord with me, and I realized something quite profound. I have met really special people in the last few weeks—people I admire who happen to have PD. I have not met patients in the way we think of patients.
Since my diagnosis, I have actually—semi-deliberately—tried to avoid people with Parkinson’s, if I am honest with myself. It started shortly after I was diagnosed when a very well-intentioned friend put me in touch with a person who had been diagnosed 4-5 years before. He was a really lovely guy and we had a lot in common. It was a great idea.
I learned a lot, and it was really informative. If it had been by voice only, all would have been okay. However, it was a video call, and all I took from the chat was the tremor, and it haunted me. It scared me to the core. If I am honest, I deliberately shied away from it. I had no problem meeting therapists, doctors, and other professionals, but I avoided group settings, meetings, conferences, webinars—it was too hard for me. As a result, I have genuinely not interacted with many people with PD.
New Connections
Over the last few weeks, since I started blogging intensively and worked with others to put together the WhatsApp group on the Produadopa/Vyalev pump, I have had many conversations with people with PD and engaged with people with Parkinson’s intensely for the first time. It has been eye-opening, and I realized it tonight, and it has really made me happy. I love the people I have met. The one thing I have not met are patients.
To some people, it must be so obvious—to me, not. I have seen a completely new world.
They get me, I get them. We understand each other and have different but similar struggles. We are not the same—we are all people on whom PD has been bolted on. We all have different perspectives, and none of us want to be where we are, but we are all in a similar boat. It has been hugely positive. We certainly don’t agree with each other, and many people have challenged my thoughts, but it has been from a very insightful and personal place.
Not everyone is bouncy, happy, positive, and full of energy—in fact, many are angry, upset, lost, in pain—and all of us are concerned about the future for us and our families. But almost everyone I have met has been empathetic, open, articulate, honest, and prepared to share their experiences. Due to our tragic common bond, it has really helped me discuss and talk about things I would be unlikely to share with others.
People, Not Patients
It is possible that I have met a selected sample of people—after all, it is a lot of people active in forums, using the pump, and engaged in the community. But even so, having broken through my own fears and prejudice (yes, it is true), I have realized that I have met people, not patients.
Breaking this barrier and allowing myself to move beyond the reaction to someone’s physical condition has really helped me meet really important allies in my fight.
It took me a long time to realize this, and I know it is hard for others—those with PD and those without. People find it hard to cope with PD—some more than others—and as a result, you get all sorts of reactions from distance, to inappropriate words because people don’t know what to say, to looks of pity. Let’s face it, it is not easy for anyone. However, when you get past this, you find people, not patients. You see people with deep life experience, fight, resilience, strength, resolve, insight, and often real humor (some of it of the gallows variety).
I know some people have found value in things I have written, but I have actually gained far more from the process. Parkinson’s people ROCK. Why it took me so long to realize, I have no idea.
It is also important that healthcare professionals and carers realise this – we may literally be ‘patients’ but we are also often intelligent, well reasoned and highly competent individuals fighting to express ourselves. We are people, not patients.
A Hugely Beneficial Addition
Of course, I still love my non-PD friends and family. This new connection with the PD community looks like it could be a been a hugely beneficial addition to my life.
We have to find a new term for ‘patient’! Ideas? Or is there already something I missed?
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