6 Laws of Living in 'Comorbid County'
Comorbidity: having more than one medical condition simultaneously. If one delves into the etymology of the word, it brings you to “co” – that one’s easy, it’s just “with” – and “morbid,” “Morbid” eventually deconstructs to the Latin morbus. There are a number of definitions of morbus, one of which is “diseased.” A tertiary definition, however, is “sorrow, grief or distress.”
Sounds about right.
I recently obtained a medical ID from an engraver on Etsy. There were a finite number of lines and spaces on the tag; the artist had to position the text sideways to fit everything in. I ended up doing triage. There was no possible way all of my medical issues could fit on that metal tag, so I chose the information that seemed most pertinent for emergency medical personnel to know. I also added a note that I had a full list of meds and conditions in my wallet.
I, like many other people with chronic conditions, live in “Comorbid County.” As reluctant residents of this strange and frustrating land, we often walk on eggshells every day, hoping the sky won’t fall in on us. People looking in from the outside don’t always understand this; it’s inconceivable to them. If they better understood the laws of our land, they might understand us more completely.
1. We don’t have one doctor. We have many.
What’s that you said? We saw the doctor last week? Yep. We probably did. And we might be seeing another one or two this week, and the week after, too.
My lineup of medical providers currently includes my primary care doctor, eight specialists, my dentist and my occupational therapist. Some of my doctors simply see me once a year for checkpoints, but I see others far more often. Frustratingly, most of my doctors don’t talk to each other, which puts me in the position of having to coordinate care between them and ensure that they all see any labs and imaging results which might be relevant across specialties.
I have several calendars around my little apartment to remind me when I need to be at one doctor’s office or another. There have been weeks where I’ve ended up booking different appointments back to back to ensure everything gets taken care of. Scheduling often involves equations that resemble old fourth grade math problems: if Dr. A’s office is located at Point X, Dr. A usually runs late and it takes an hour each way on paratransit, and Dr. B is at Point Y across town and requires 45 minutes of paratransit travel time, with a variable of traffic adding up to another 45 minutes each way, would it be possible to get to both appointments in one day? Answer: Nope. Best not to risk it.
Seeing all these doctors takes a lot of time, energy, and, often, money. Occupational and physical therapy can be really helpful, but it’s also another commitment of time – often, one is in several physical therapy sessions every week.
2. When something is going well with one of our conditions, we still have a lot of others lurking about.
When one of my illnesses or conditions is stabilized, another might very well hit the fan. Sometimes there are several things happening independently. Other times, one condition develops as a complication or progression of another, or as a side effect of treatment. Either way, it means that the hits keep coming.
This is one reason why someone with a chronic illness might be frustrated when someone insists that they see improvements. It’s a mirage. There are several other conditions they’re not seeing that are still acting up. I can’t be entirely pleased when something goes well because I know it’s only a temporary lull, and there are so many other things I’m still trying to handle.
3. Sometimes we don’t know which condition is causing specific symptoms.
Since the hits keep coming, I get to play a little guessing game when a new symptom surfaces. Is one of my old pals causing more trouble? Is one of the newcomers showing me a trick I didn’t know they could do? Is it a side effect of medication, or is it something completely unrelated to the other conditions I have? There are times I’ve ended up mentioning a new symptom to several different specialists before it’s been pinpointed.
That’s the puzzle of living in Comorbid County. Not only are you unaware of when you’re going to be hit with something new, you often have no idea whence it came.
4. We may have mixed feelings when something new crops up.
Paradoxes live in Comorbid County. For me, there’s often relief that the doctors have found something tangible that can possibly be treated or at least monitored, at least we’ve been able to pin it down. There’s frustration, because the test results might signify that my condition is worsening. There’s trepidation, because it might lead to yet another doctor on the roster, more medication or more testing.
I also experience anger, knowing that certain conditions remained undiagnosed for so long. I’ve been diagnosed with a few things that were hiding in plain sight and waving all sorts of red flags, like primary immune deficiency.
5. We won’t necessarily tell you everything that’s up with us.
I don’t think anyone could remember all of my diagnoses without looking at a cheat sheet. I don’t even bother explaining it all most of the time outside of my doctors’ appointments. People tend to zone out when you try to rattle off a long list of issues. I end up doing triage, mentioning the conditions that pull the most focus or time at any given moment, giving specifics only when absolutely necessary, and describing symptoms rather than cause. For example, I might simply tell someone I have trouble climbing stairs without mentioning the reasons. My friends know I’m extremely fatigued all the time, but they don’t necessarily know all the conditions that contribute to it.
Thus, if a friend mentions one specific condition or another, don’t assume that’s the only thing going on with them. There’s a strong chance it might be the most pertinent issue at that particular moment. Similarly, if a friend mentions a specific symptom, such as being extremely fatigued or having a lot of pain, don’t assume it’s only coming from one particular condition. There might be a lot of overlap.
6. It can be really overwhelming.
I might occasionally laugh about it all among friends, but in truth, I feel as though I’m being chipped away piece by piece as various systems malfunction. I’d say that I really want a break from the ongoing medical drama, but with my luck, my body would take that request a little too literally.
I’m extremely glad and grateful that doctors have finally been able to diagnose me. Getting that far is a challenge for many people with chronic illnesses, and it was a battle for me, too. However, when the hits keep coming and the list of diagnoses keeps growing, it becomes overwhelming.
After a while, dealing with all of these conditions – named though they may be — begins to feel like Level 20 in Tetris. I try my best to fit all the blocks together, but the game’s moving too fast and the pieces I’m getting don’t match particularly well. At some point they reach the top of the screen and I’m totally snowed under.
That’s one of the reasons those of us with chronic illness really need support from our loved ones. We might tell you that we’re tired, we’re sick, we’re afraid, we hurt. We might not always mention when we feel totally overwhelmed, but it might color every aspect of our interaction with you.
Understand that when we tell you about one illness, there might be five others tagging along that we’re not mentioning. We get stressed. We get overwhelmed. And it can be incredibly hard to deal with it when we feel alone. We might really, really need to talk to you about it, or write about our illnesses, or seek out others who are walking the same road.
You can’t stop us from living in Comorbid County, and you can’t make our conditions go away. You can, however, stay close to us and make sure that we’re not alone on the path.
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