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What Chronic Illness Looks Like
Awww. How perfect!
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.
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Oooh. Colorful.
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.
Not my house. This one might actually be cleaner…
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 General
Disease is part of the normal aging process. When my father died of Alzheimer’s, no one in the family was much comforted that we could identify the disease that killed him. In the final diagnosis, he died of old age.
Thanks for (repeatedly) not actually answering the points I’ve raised.
I’m sorry that your father died of old age with Alzheimer’s as a complicating factor. (Much the same could be said of Mr. She, who was the same age as Gene Wilder when he died.)
I’m glad that your family had that sussed. What part of “my mother had fronto-temporal dementia” (a fact that my family clearly understood) didn’t you get? Along with what I’m saying about the necessity, once the diagnosis is understood, for proper treatment?
Thanks for pointing out something I’m (apparently) too stupid to understand.
I am not sure why we seem to be talking past each other (if you’re equally puzzled, you might want to go back and re-read a few of my comments to see where you missed the rather obvious signals), but I’m pretty sure that the disconnect isn’t on my end.
I bid you good evening, and I am unfollowing this thread. So don’t bother replying. Life, as implied heretofore, is just too short, and although I’m doddering into senility, I have other things to do.
Thanks for (repeatedly) not actually answering the points I’ve raised.
I’m sorry that your father died of old age with Alzheimer’s as a complicating factor. (Much the same could be said of Mr. She, who was the same age as Gene Wilder when he died.)
I’m glad that your family had that sussed. What part of “my mother had fronto-temporal dementia” (a fact that my family clearly understood) didn’t you get? Along with what I’m saying about the necessity, once the diagnosis is understood, for proper treatment?
Thanks for pointing out something I’m (apparently) too stupid to understand.
I am not sure why we seem to be talking past each other (if you’re equally puzzled, you might want to go back and re-read a few of my comments to see where you missed the rather obvious signals), but I’m pretty sure that the disconnect isn’t on my end.
I bid you good evening, and I am unfollowing this thread. So don’t bother replying. Life, as implied heretofore, is just too short, and although I’m doddering into senility, I have other things to do.
PS, and BTW–“frontotemporal dementia,” which my mother suffered from, undiagnosed for about 30 years, isn’t a disease of “old age.” You might want to check that out, before making assumptions of the sort you have.
Very correct. @basilfawlty is very wrong here. Many people live to very old ages relatively healthy. We associate age with disease because for a lot of history no one knew what caused these problems; it was just “old age”. We now know that heart conditions, obesity, certain diets, and genetic conditions can shorten one’s life. This is not a function of “old age” or the body parts just wearing out and stopping. Pretending it is does medicine a great disservice and reduces the drive for prevention of any kind.
I mean, why eat healthy if you’re just going to die anyway? Of “old age” (unknown causes)?
Good question.
Is snottiness a symptom? If so, the condition may be genetic.
It’s not fun to be in your 20s or 30s and have health conditions that “only old people have.” The other comment I get is, “You’re too young to have that! What are you going to do when you’re (fill in the blank)?” I’m 47 and I still get stuff like that.
Given what I know of my lovely wife Amanda, many chronically ill are punishing themselves enough that they don’t need others telling them they are “too young” or getting told only old folks have symptoms like that. Empathy seems to be the hardest thing for people to muster.
Yes! It’s true. It’s hard to learn that you don’t have to apologize for a condition you don’t have a lot of control over. Your empathy is what makes you such a great caregiver. I married a good man who tries hard to understand.
Hey now. Not helpful, not helping your point, either. You can age without dementia. It’s pretty common.
My father made it to 84 without losing a single step. My mother is over eighty, and doing pretty well so far, even despite a couple of TIAs. I don’t know of any of my ancestors who had any form of dementia. There is that one cousin, but that comes from her father’s family, not the mutual family.
And TIAs are a little bit of a mystery in that we think they’re clots… but what if they’re not? We don’t actually know what stopped the blood flow and caused symptoms for a short time.
Absolutely. Both of my parents died at age 92 and both were lucid and intelligent. A little vague sometimes, but then so am I. The tragedy was that in the case of my mother her physical body deserted her and she was trapped inside it with no external control of her circumstances. I don’t want to end up like that either.