The Hierarchy of Chronic Illness
Anyone who has taken a basic economics course will recognize the image above. There’s a rational order to survival, and if you skip some levels, you’re putting your life at risk.
The same type of hierarchy can be created for those of us with chronic illness. At the bottom are the diseases that can kill you in some way, and you have to treat those diseases first before you move on to treating other issues.
For me, Crohn’s disease is the base of everything. If I don’t treat my Crohn’s disease, my intestines will become blocked and rupture, as they did in 2010, and I could die. Luckily, I was already in the hospital when it happened last time, and they were able to rush me to surgery mere hours after the rupture. It was an experience I’m not keen to repeat, so my doctor and I treat my Crohn’s disease gingerly, like a wild animal that is normally tame but could turn on you at any time.
The problem is, the things I do to keep the Crohn’s at bay are things that cause repercussions in other aspects of my health and well-being. These ripples can be felt in small ways, such as an increased inclination to injury due to bone loss from years of malnutrition, or in big ways, as when the required medications can and most likely will cause some sort of cancer down the road. I tell people it’s not a case of IF I will get cancer, it’s WHICH ONE will get me.
All of this gets even more complicated when you add in my other chronic illnesses. After Crohn’s disease, my number one problem is fibromyalgia. It won’t kill me, but the pain makes day-to-day life nearly impossible if I can’t find a way to manage it. For years, I took vitamin supplements, exercised regularly, tried to eat well (though raw veggies, fruit with skin, nuts, and seeds were out thanks to the Crohn’s), and basically managed my pain through healthy habits.
As I got older, though, the pain was lasting longer and worsening in severity. I couldn’t take over the counter medications (Ibuprofen has been shown to cause a rebound effect in Crohn’s patients, and Tylenol and the like are a risk to a Crohn’s-weakened liver), so I had to visit a rheumatologist to figure out some options.
We started with some small doses of Cymbalta and Lyrica, which helped for a while. But my body, unfortunately, has a tendency to quickly develop resistance and immunity to drugs, so the dosage has been steadily increasing.
Now we reach the intersection to my next health issue, which isn’t an illness, per se, but is a problematic condition I suffer from — exhaustion. This is a new complaint, which has come up in the last two or three years. I’ve seen neurologists, my rheumatologist, and specialized sleep neurologists to try to find a solution to my chronic, debilitating exhaustion. I’ve been diagnosed with sleep apnea and given a CPAP machine, which helps, but does not quite cure anything. I can sleep longer on the machine, but still don’t feel rested when I wake.
I often experience periods of “twilight sleep,” where I’m aware that I’m dreaming and I have trouble distinguishing between sleep and awake. I’ve been given a small dose of a sleeping pill to take at bedtime to keep me in deep, REM sleep in hopes of restoring some of my energy levels. Again, it helps, but does not manage to alleviate all of the symptoms of exhaustion. Getting up in the morning is often a monumental challenge that takes anywhere from 30 minutes to 2 hours to complete.
Lately, insomnia has crept into my life. Despite the nightly sleeping pill, my brain often races, making it impossible to fall asleep though my body is ready to collapse with exhaustion. Often, during these episodes, my body is uncomfortable in any position, and I have to distract myself with television or podcasts in order to lay still for any length of time.
It didn’t occur to me until today that an increase in my Lyrica dose to combat the increasing pain in my hips could be to blame for the recent sleep disruption. With the craziness of the move, getting my son on a plane back to his father, and celebrating the independence holiday, I had plenty of reasons to be a little “off.” But as we are settling into normal routines and as the unpacking slows down, the nightly disturbances have become, if anything, more acute.
I was reading a memoir of a woman with bipolar disorder, and she was describing some of the effects of her “mania,” and I recognized some of my symptoms. I take Lyrica and Cymbalta for pain, but they are often used to treat bipolar disorder and other brain related conditions. I discovered last year, to my everlasting embarrassment, that these medications can actually CAUSE some of the symptoms they are meant to treat, even in someone who is not taking the medications for mental disorders. In my case, a change in prescription providers stranded my Cymbalta in Philadelphia for two weeks, and I was seven days off of the medication. I became sleep-deprived to the point of complete and utter breakdown. I was ready to commit myself to a hospital mental ward when an offhand comment to my sleep doctor about being “off Cymbalta right now” pinpointed the problem.
Which brings me back to today. Managing one chronic illness can be a full time job. I manage at least three that I know of, and right now the only one that is under control is the Crohn’s disease. Great, so I won’t die, but how am I supposed to LIVE if I can’t fix the other problems? I’ve been through so many pain management options that had to be stopped because of conflicts with Crohn’s medications or the intricacies of the disease itself. I’m missing a foot and a half of my small intestine because of the surgery of 2010, so many medications can’t be absorbed into my system orally. No more birth control pills to control the Crohn’s effects during my period, now I need the Ring. Even supplements are a danger now that my digestive tract is smaller.
We call them “invisible illnesses,” but anyone who lives with someone with a chronic condition can see the effects of their diseases. My children know it takes time for me to get up in the morning, so they will visit me several times while I’m in bed trying to get my eyes to stay open. My husband hears me groaning in pain as I lean over to empty the dishwasher.
The base of my pyramid is strong. I’ve got the killer under control. Unfortunately, it’s the next layer up, the insidious torturer, that is threatening to bring the whole thing down. It may be the sleep disorder, level 3, that is going haywire, but that’s just a reaction to the medications for the fibromyalgia.
A pyramid is supposed to be one of the most stable building structures available. Cultures around the world built pyramids that stood as the tallest man-made structures for centuries. But if you’re trying to put granite on top of an adobe base, it can’t support the weight.
Day by day those of us with chronic illness are messing with the blocks in our pyramid like a giant game of triangle Jenga. Be kind to us, please. We’re doing the best we can.
