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Chronic illnesses, syndromes, or conditions aren’t something you choose to do or not do. They’re just there. You either live with them or die from them. That is how these illnesses work. While this short answer might be considered trite, it is also very true. We do not get much in the way of choices when it comes to these things. Many of them are genetic, some are environmental, but most cannot be cured, just managed.
That being the case, what other choices do we have?
We can either live and do the things that sustain our lives or we can choose death. I would never advocate for suicide (assisted or other) because the human condition in all of its forms is precious to the human experiences of others and to society. But there really isn’t much of a choice for people who have these conditions. Either we get busy living or we just spend a very long time dying. While most people understand this concept and accept it, they seem to think that chronic illnesses all look a certain way; sickly, withering, immobile, painful, or wasting.
What most people do not understand is that chronic illnesses impact everyone in the family in ways that were previously unimaginable. Though some chronic illnesses are visible, many (even most) are not. The patient looks normal. But one step inside their carefully constructed lives and we begin to see the chaos.
- Their car isn’t very clean. There are scraps of paper everywhere and it is difficult to determine when (if ever) that car was washed. What color was it originally? Who knows? The dark sheen of dust and dirt has enveloped the contraption. CSI would have a difficult job if there were a crime; fingerprints are impressed across the entire body.
- When was the last time you saw their house? If they don’t have a cleaner come in regularly and you surprise them with a home inspection, you are probably in for a surprise. Mail is in stacks. Unread. Dishes get piled up. It looks like a college student lives here. Only a college student with about 20 prescription bottles out across the counter.
That’s right 20 prescriptions. Oh, you probably never see them take it, but you’ll see them lined up or gathered somewhere. Why gathered? Because if not in plain sight, they will be forgotten, taken late, or lost.
- Everything is everywhere. Again, if it isn’t in plain sight, it will get lost. Eventually, the important gets covered by the also important which is covered by the most recently important items to be put away or lost.
- The bathroom is tolerable, but again, don’t look in drawers or in crevices.
People with chronic illness live and do whatever they can to live their lives in the best way possible. So many of those times require lessening movement, reducing energy expenditure, or plain “resting”. Ask them about their day? Most of it will consist of doctor’s appointments, scheduling doctor’s appointments, labs, talking to insurance, paying bills, or working on their insurance issues. While in pain, exhausted, or otherwise ill, they will spend hours a day trying to sort out medical treatment so that they can feel better, so that they can function.
In the meantime, life goes on. Days become weeks and the dishes are still in the sink. The laundry has piled up. Mail and news ads are everywhere….but work and a normal appearance takes precedence.
So the car goes unwashed, the mail goes unsorted and unfiled, the laundry piles, and time marches on.
Next time someone mentions their cancer or their spouse’s/child’s/ward’s chronic illness, keep this picture in mind. It is not just the pain that scars the chronically ill and their families. It is how life is stolen while attempting to get treatment and attempting to keep things together enough that CPS isn’t called or they don’t find themselves on an episode of Hoarders. It is the tension in their marriage because caregiving isn’t always about feeding/clothing/bathing; it is about being able to pick up the slack when the other requires help. It is the constant low (or high!) level chaos that exists because there is always something going on in the background that needs attention but cannot get it because something else must take priority.
Chronic illness looks like an unwashed car, a pile of unread mail, and full laundry hamper.
Chronic illness looks like an exhausted family.
Chronic illnesses are never just a series of roadblocks for the patient. They are an obligatory obstacle course for the family, too. Just remember that when you see them outside or at a social function. It took the work of many people in order to look this normal. They are all worn out, tired, and drained… and that’s before they even showed up for your daughter’s Bat Mitzvah. If you see them outside in clean clothing, put together, and looking happy, that’s already a gift because that is not what chronic illness looks like.Published in