There is a false presumption among some that the chronically ill do nothing more than spend their days in bed, wailing in agony, and, if those of us with chronic illness are ever witnessed enjoying a rare good moment, it is further presumed by these misguided souls that we “must not be that sick” or that we have somehow been instantly and magically cured. Unfortunately, because of this subtle pressure (intended or not) to perpetually appear and act ill, lest we not be taken in earnest, many in the chronic illness community conclude we must never allow others to see us in a lighthearted, pleasant moment. We question in our own minds whether we can indeed be ill and have relatively good times and feel incredible guilt over any enjoyment. We doubt ourselves and often feel compelled to appear in a constant state of agony, ceding to those who judge us as inventing or exaggerating our condition merely because we seek attention, pity, or avoidance of responsibilities. We make the mistake of believing we must sacrifice the good times and speak only of our misery so that others will take our illness seriously.
Much of the problem stems from a misunderstanding of “chronic” illness. To be chronically ill does not necessarily mean that every moment of every day we suffer. Unfortunately, some do, but others experience intermittent symptoms and/or symptoms which vary in intensity from mild to quite severe. Chronic illness can be unpredictable – disabling one day and bearable the next, stable for a spell and beyond control, even life-threatening, at other times. We must take advantage of the fleeting moments in which symptoms are minimal to have any sort of decent life.
In addition, even those of us who do have constant symptoms have often become masters of disguise and have learned to mask our symptoms for the benefit of others. We have become accustomed to pushing our pain to the back of our minds so that we can participate, if only briefly, in everyday “normal” life. What the world sees is what we allow it to see, and our private moments of pain and anguish remain secret. We are ill, but we hide it well.
The impact of an illness on one’s life should not be judged by a single moment in time. Those who doubt and induce guilt would do well to understand that outer appearances often deceive. The chronically ill need not feel guilty for rare feel-good moments nor for clinging to their desire for normalcy. I leave you with the following explanation of sorts, thoughts from my own life which has been deeply impacted by Gastroparesis, a life-altering digestive motility disorder which has robbed me not only of my ability to eat but also of any semblance of “normal,” in the hope you will truly “see” what is often “unseen” and we might finally set aside the judgments and be lifted of our guilty burdens:
It does not mean I am "cured" if
... you see me eating a forbidden food. I am sometimes so hungry and tired of protein drinks that I am willing to cope with nausea and/or vomiting for a moment's pleasure, for a mere morsel of a food I have not tasted in years. I am also likely fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so results in agony beyond compare.
... you see me donning makeup and a nice outfit, laughing, enjoying a movie, a concert, or my daughter's school play. There are times I am so weary of looking at four walls I could scream. And even though I will pay for this excursion dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face and to know that, for a brief time, we did something "normal" together and I did not disappoint her, as I have a million other times. Please note, my attendance likely means I have gone without food and drink for the last few days, as that is now the only way I can manage to stop the symptoms which otherwise prevent me from attending such outings. And when the event ends, I will most assuredly go a few days more without nutrition, as the exertion will sicken me to the point I cannot immediately bear the added suffering of eating and drinking.
... I say I am fine. I do not mean "fine" as you perhaps define it. I mean that as a serious, excruciatingly painful, life-altering, daily chronic illness goes, this is not one of my absolute worst days, and I may actually survive it. Alternately, I may mean, "I know you do not really want the truth and are simply being polite, so I am going to do us both a favor and tell you what you wish to hear, even though I feel as if I may collapse at any second." My smile often masks my true emotions and symptoms and is intended only for your comfort.
... I speak of a medication or therapy improving my symptoms. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or lessens my nausea. This does not mean I am suddenly able to function at 100% or that I can now fully participate in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow.
... I write an essay, post a meme, record a video, or join a chat. To avoid total isolation, I largely connect online now. Further, it is the means by which I advocate, and, despite my struggle, I manage to show up, speak up, and fight -- because NOTHING is more important to me than finding a genuine cure.
My good moments are few, and I refuse to feel guilty for taking full advantage of them. Thank you for your willingness to see past initial appearances and for acknowledging the serious nature of my illness.
