Skip to Accessibility Tools Skip to Content Skip to Footer
A half-capped pill floats in front of one side with clouds and light rays and another side with storm clouds, rain, and lightning bolts.

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.

Up & down

Depending upon the day, moods can vary depending upon one’s stress, sleep, life circumstances, relationships, pain, financial pressure, sunlight deprivation, brain chemistry, or a variety of reasons.

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • bobaleen
    6 days ago

    I have never really felt the “off” periods only because I have also never really felt my “on” periods. Medication has not worked for me very well at all. So i continue to stumble along trying not to fall. I dont really tell many friends about the truth about my condition but rather just say I am doing “fine” on my better days and “OK” on my not so good days.

  • Hubby
    7 days ago

    Fine
    Not too bad
    Ok
    Alright
    My choice used most frequently
    “up and down”
    Keeps things easy.

  • stella
    7 days ago

    This is a great article, and speaks the truth. Thank you for telling these truths.

  • stella
    7 days ago

    This is a great article, and speaks the truth. I say, fine because it is quick and I don’t want to become the lady that complains all the time.

  • April.Sluder moderator
    6 days ago

    Thanks for sharing @stella. April – Parkinsonsdisease.net Team

  • ajlamb
    7 days ago

    This is a beautifully written article that applies to me in every way. I am 48 and most of my friends are very active, healthy people. It is extraordinarily difficult to say anything beyond “fine” because I don’t want to repeatedly associate myself with “sick”. I hate it terribly. I have very bad OFF days and I don’t want to rehash that in explanation either. Frankly, it requires precious strength to explain and re explain because there is always question after question. And I understand why, they are a concerned friend, I would be to.

    Your article was something I can truly identify with and has given me some things to think about. Thank you for sharing this!

  • April.Sluder moderator
    6 days ago

    I’m so glad you enjoyed the article @ajlamb. I completely understand not wanting to use needed energy trying to explain things. Thank you for sharing your thoughts. April – Parkinsonsdisease.net Team

  • Dan Glass moderator
    2 weeks ago

    I’ve found more people are respectful when they hear what I’m going through and how I handle it / advocate for it… even when they don’t understand all of it.

    Great article!

  • Poll