The Duality of Illness: Terms We Should Know
When it comes to trying to explain how we feel on a particular day, it can be difficult to articulate in a way for someone without our exact illness (in my case, Parkinson’s disease) to appreciate what we are experiencing.
Often unexpected and more than frustrating, explaining what it is that we face can often be tedious to relay and not always easily expressed. For what we may perceive to be convenience, we will take the easy way and speak in simple terms that really say very little.
Are we doing an injustice? We all do it, whether to deflect the truth, to save time, avoid sympathy, or just for personal reasons, we respond to those questions of concern with brief answers. Often misunderstood, the patient can be misread as being curt. It can be difficult explaining chronic illness to the uninitiated. Maybe, if we do a better job with our communication, we may come to a better understanding, and see a better result that leads to better awareness.
Good & bad
Few days are all bad or all good, but we are quick to label a day as one or the other. Perceiving our day in extremes in this way or that way limits our appreciation of all the in-between moments. We usually remember the standout moments, whether they are remembered as positive or negative. There are lessons to be learned in those supposed “bad” moments and overlooked positive moments that too often we fail to recognize. There needs to be some grey in a world that isn’t so black and white.
On & off
It is common when speaking to someone with Parkinson’s disease that the person with the illness will say that they are “on” or “off”, meaning that their medicines are working well or not. For those of us who are dependent upon the efficacy and timing of our medicines, “on or off” can dictate the entire day or our moment to moment state. Maintaining a balance of several medications requires a good understanding of our own body.
We all can find ourselves in a funk, feeling down, or having a wonderful day. Our moods can overtake us if we aren’t careful. Moods and feelings are hard enough to understand but when combined with neurological disorders and the meds we take for these illnesses, moods can become even more unpredictable for all parties involved.
Fine & not fine
“Fine” is often the response of choice when asked how we are doing. The response is a nicety that says very little and deflects the posed question. Possibly, a better tack to take might be to turn that opportunity into an educational moment. Unveiling the secrets of Parkinson’s disease or any other ailment to those who have a genuine concern for our wellbeing should be kept informed as needed and with more than a one-word answer. Here is our opportunity to share and connect with someone genuinely interested in our ailment.
The next time someone asks you about how you are doing, consider a truthful yet brief response and see if your response leads to constructive discussion and better communication between you and the other party. Taking advantage of these teaching moments can lead to positive changes. You may very well build a closer bond with friends and family if you let them know what it is you are experiencing.
Do you think there is enough awareness of Parkinson's disease?