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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.
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Thanks for this insight. First my sister-in-law has gone through a major health crisis and now my brother. Unfortunately they are across the country and, generally, would not be the type to ask for help anyway.
Excellent article. We feel this everyday at the C. U. household. At times my lovely wife Amanda has been in tears because she simply can’t help me as much as she wants — as much as she used to when we were first married. Setting up routines helps some, but there’s still so much that we haven’t the energy to do.
I know they aren’t asking for it. But they will need it if they don’t already. One way to help? Gift cards for dinners delivered. OR just tell them you’ll have dinner delivered, ask them what they like and then order it online/get it delivered straight to them. It is super easy and it takes a teensy bit of stress off of them because it’s removed the thought of meal planning/cooking/cleaning dishes/putting away. Even if it’s just one meal.
That’s a tiny thing that they didn’t have to worry about or plan for or rest for.
It seems like you are far and there’s nothing to do. But the internet (and Covid, really) has pushed people into a new era where delivery options and assistance are just a click away. It doesn’t even have to be very expensive.
Just one thought of of the ways. Do you know any of your brother’s local friends? Could you talk to your SiL about them/get their contact info? You could check in on him through them and help them to organize meal-sharing or grocery sharing.
Thanks for the ideas. We all kid, in a way, that we’re too German to do much for each other. I will try to be more pro-active.
OMG. Yes. (I thought about adding emphasis for the parts of this excerpt that rang my bell, then realized that the whole of it did. So, no point.)
Here are a couple of shots of what my mother’s chronic illness (frontotemporal dementia) looked like towards the end of her life. So help me, if I ever write a short story or long novel about the experience, it will be called Fifty Cans of Fly Spray. Eff the shades of gray. She bought can after can of fly spray, with an obsession towards Raid, which reminded her of her happy time in the US, always forgetting that she’d bought the one before:
This may be the last photo I ever took, IRL, of mum:
And here’s the honeymoon shot of my father and mother on their way to Nigeria for the first time. “my, she was yar.”
And my stepson’s lifelong mental illness, paranoid schizophrenia, gender dysphoria, bipolar disorder, and-on-and-on-and-on:
I won’t post the photos of Sam and his Filipino “wife,” nor those of his “happiness” with those two in the final transgender love triangle in which they beat him to a pulp and, after whose actions towards him put him in a coma for seven months and resulted in his eventual merciful death. One of them is serving 20-40 years, and the other 7-10. Remarkably, someone (who thankfully is no longer here) on Ricochet, and who I once counted as a friend (probably not the person you’re thinking of) found it unworthy and whiny of me to express this opinion. It’s taken me, in my own chronic recovery, a few years to get over it. And yet I have. Ugly is as ugly does, as they say. And, wow, she has proven herself to be so. And I’ve moved on.
Here’s a photo of Sam as his family likes to remember him:
God. He loved it here on the farm. Until he decided, in his madness, that I, his stepmother, had raped him in the years before I even knew him and that his dad who loved him dearly, had caused him immeasurable harm.
I’m a believer in the power of human connection. But if you haven’t lived it in one form or another, I’m not sure you can know how it feels.
Those who love and care for those with mental illness deserve their own post, not just on the experiences of being the family members, but on how the laws we repealed and enacted in the name of “freedom” have maimed or even killed those it was supposed to help. The amount of helplessness when it’s just out of reach… it’s almost unbearable.
I have too many words and feelings and opinions on that. I do not know what I’ll ever be able to form them into something suitable for public consumption. It’s just so overwhelming, I’m not certain that grammar and formatting could be expected to conform to anything recognizable. I’m not even sure that it would have any sort of coherent flow.
And worse, because my loved ones are still around, it also just might not be my story to tell. On the internet.
But this is a taste for all of those who love and live with chronic illness. It’s no fun having the illness, but being a part of that family is also really, really difficult.
Agreed on mental illness. It deserves a discussion of its own. A couple years back I read Insane Consequences and was angry, then our family saw one of our cousins struggle with mental illness and that has made me angrier.
Yep. You and I should hang out some time. And break things. Because the system isn’t just broken, it’s resulted in more deaths than ever were necessary. All in the name of freedom and personal rights. Of course, no one knew how the laws would be warped and misinterpreted and legislated into the beasts they are now.
Britney Spears has a conservator. And on the other hand, we have this guy. I suppose the important thing to note is that the laws haven’t changed. Regardless of who they hurt.
Sounds a bit like old age.
I’m not entirely sure that older folks would much enjoy that comparison. Are old people supposed to be messier or have their spouse pick up after them because they can’t anymore? Because old is disabled?
I mean, once upon a time, I might have agreed with you. But having seen 96 year olds that still drive and 104 year olds that commute to Pasadena to be museum docents, I can’t really.
Thanks for these insights. Right now my wife and I and taking care of her mother, and we don’t know how much longer she has.
And then there is the whole part of getting the proper diagnosis or, indeed, diagnoses, since auto-immune diseases often cluster.
Not on my father’s side of the family, one in which the old fogies get a bit wooly as many of them meander on to their centenary, but in which they’re still capable of remarks such as the one Auntie Pat (98 in July, may she live forever) made on watching Prince Philip’s funeral last month and being rather unimpressed with a prayer led by a colorless vicar (the Archbishop of Canterbury):
That being said, it is important to separate out the natural slowing-down process of old age from actual illnesses that afflict us as we age, many of which can be treated and somewhat alleviated. Sometimes it can be hard to tell the difference.
At first. Looking back on Mr. She’s last year as dementia took over his life and he began to forget us all, even towards the end his wife of 40 years, I realize now that it began much sooner than I thought, as I wrote off much of his increasingly erratic and forgetful behavior as the start of his journey into old age.
Eventually though, you get to the point where it’s easy to tell the difference.
I like to think of old age as that time of life when chronic conditions begin to appear and irrevocably alter our priorities. The need to clean is often an early casualty.
Thank you very much for this post. Almost left Ricochet a few months ago. Guess I stayed to read this.
My 91 year old sister has the chronic illnesses. She has 24 hr care at her home right now. Thank goodness she LOVES one of her caregivers. When we have to sell her house to pay the bills I do not know what is going to happen. A line of equity has gotten us this far but is about to play out. Big family but no place for her to go live due to a lot of different problems.
But it is MY house that looks like the pictures above. Doing her laundry, paying her bills, bringing her meals in addition to trying to live a normal life is daunting.
Thank you again.
Why didn’t you go to medical school?
I recently had to have my car towed. I rode with the tow trucker driver to the next location. He had all sort of stories about all the stuff he has seen over the years.
He said that you can always tell when the car belongs to someone on drugs. Their cars are full of junk, and they have a dozen duplicate items in their car as they can never find what they need, so they always end up buying another one — several cigarette lighters, several phone chargers, etc., etc.
However, perhaps some of it is mental illness. I rarely clean my car or most things either. I guess I need to do that more often…
Thanks for the excellent post. You could be describing me. I hope it helps more people understand how difficult things can be.
NO ONE leaves junk in their cars in SF. Will get stolen.
Yep. Chronic illness right there. The well take care of the sick until they make themselves sick. We have a bit of a problem with that.
I just wanted to say that I’m glad you were here for this. More people need to know that we see you. We understand this and we see your struggle.
Who, me? Why would I do a thing like that?
This needed to be said! Thank you! I’ve been chronically ill most of my life. Most people get the ill and miss the chronic part of it. Getting to the correct diagnosis is a huge part of it. You were inspired to share this!
’cause then you could wield a scapel.
And gosh, isn’t it lovely when that’s all it is? Tra la la. Puppies, butterflies, and rainbows, etc.
That’s not what’s being discussed here, though. Lord knows, the “need to clean” has never been a startlingly front-and-center priority for me, and it’s less so as I age (I think that either that’s perfectly normal with age, or even if it isn’t, it doesn’t matter all that much. As you say, priorities change.)
What I’m talking about is massively dysfunctional changes in which, due to diagnosable illnesses, the person becomes someone other than who he or she once was.
My mother suffered from degenerative frontotemporal dementia. And I once wrote this about her:
My mother lived alone in her own filth, self-medicating with alcohol, for two years while she was visited on a regular basis by Andy the social worker and other minions of the National Health Service. When she saw him coming, she’d lean out the bathroom window and shout “[Expletive] off!” This seemed to convince him that she’d made–what he called–her “lifestyle choice” and that nothing needed to be done. And they’d write up their notes accordingly. So, despite the best efforts of my formidable sister (directly on the scene), nothing was done. And my mother continued to suffer and decline.
Eventually, Dr. Theodoulou (Bless his heart; I’ll never forget his name) came on the scene, made an actual visit to my mother’s home, saw the state she was in, and within about five minutes, he’d rounded up the second doctor required to sign the paper and “section” my mother (the British term for involuntary psychiatric commitment), and put her in the hospital for her own protection–to keep her clean, safe and nourished. She never went home again, and spent the last few years of her life in a wonderful and humane nursing home.
Expecting completely unprepared and untrained families to cope with this sort of thing on their own, and dismissing the misery endured by both the patients and the caregivers of old people who have real illnesses as the natural effects of “aging” does a horrible, even a cruel, disservice to both the victims of such illnesses and the people who are doing their best (sometimes with devastating consequences to themselves) to care for them.
The man has a point. And an edge.
Real illnesses are the natural effects of aging. They are what eventually kill us. By all means, ameliorate the symptoms. But don’t pretend there’s always a cure.
Hello? Where have I pretended there’s a cure? Please don’t put words in my mouth. Where on earth are you getting the idea that somehow an assertion that an actual illness is in play means that there must be a cure which can “fix” it? Not from me, I’m pretty sure. Please stop playing games.
There was no “cure” for my mother’s dementia. What I and my family would have appreciated, however, is the acknowledgement that it existed–something that, for years, the British medical establishment refused to consider, rather falling back on the thought that she was simply “growing old.”
If there’s no cure or effective treatment for a disease, then what’s the point of distinguishing the disease from the normal aging process? Disease is part of the normal aging process and brings it to a close. Ameliorating the suffering is the important thing.
The point of “distinguishing the disease from the normal aging process” has to do with the best treatment options for the afflicted and of alleviating the difficulties and often the misery of both the sufferer and the family. My own family is rife with the elderly of both sorts. And it’s pretty easy to tell which is which. It’s not, actually, rocket science.
The first step in problem solving (it’s generally recognized) is recognizing what the problem is, and defining it.
“Oh, it’s just ‘old age’ so deal with it” is neither recognition nor definition.
I’ve been suffering from chronic diseases since my twenties. Even by the oldest definitions, I’m still not in old age. My mother is over eighty and doing fine, better than I am. But I guess it’s just old age in my case.