I’ll start with the obvious – no one likes being sick.
And why would they? There’s pain. There’s discomfort. There’s fatigue. Depending on the affliction, there might even be a substantial measure of psychological distress.
I’m going to go out on a limb here and wager that most people don’t find any of these things enjoyable. (Well — some people enjoy pain. But not in conjunction with the other stuff, I’m guessing.) Just try and remember the last time you saw a Facebook post about how awesome it is to have a migraine. Or Crohn’s disease. Or Restless Leg Syndrome.
I have always been a sickly person. I’m fortunate that none of my ailments are terminal, or even debilitating to the point where I can’t live a relatively normal life. Nevertheless, there’s always something wrong with me, and that means inconveniences. For me. For others.
I don’t remember a time when I didn’t have medical problems. As a child I had an underdeveloped bladder and ureter, which caused all manner of uro-gynecological concerns. As a tween I battled hypoglycemia and a barrage of food allergies. Adolescence brought with it severe menstrual problems and the occurrence of weird, unexplained fugues – fugues which later evolved into full-blown seizures.
When I was seventeen, I was diagnosed with hormonally-triggered generalized epilepsy.
With college came kidney stones and clinical depression. Somewhere in my early twenties, environmental allergies kicked in, along with allergic conjunctivitis, chronic bronchitis, and reactive airway disease. Inhalers abounded.
As I hit middle age, my epilepsy took a turn for the worse, and like so many other middle-aged women, I also developed high blood pressure, high cholesterol, and deteriorating vision. Then I started the process of peri-menopause roughly fifteen years early. Ain’t that a kick in the head?
Then, after delivering my one and only child, I suffered from a full-blown pelvic organ prolapse. (You can read all about that journey in my series Pelvic Organs? Come on Down! But be warned, it is not for the faint of heart.) And last but definitely not least, I was recently diagnosed with gall bladder disease and am currently awaiting my gall bladder’s impending removal.
SO. Now that we’ve got all of that out of the way, let’s change tack for a moment.
Let’s talk about the guilt.
As a liberal Democrat, a committed Catholic, and a woman in midlife, I know guilt and I know it well. There are two distinct brands. There’s guilt about things you consciously did and/or said, and there’s guilt about stuff you had no control over whatsoever. The first kind of guilt makes a lot of sense. It’s rational. You made a poor decision and it negatively affected someone and now you feel bad about it. And you know what’s weird? Sometimes that kind of guilt can even feel… right. Indulgent. Like taking a bath in a Jacuzzi full of warm chocolate.
Because you DESERVE it.
The second kind of guilt, however, is totally and completely irrational. We know this to be true. And yet a surprising number of our guilty feelings fall into this category, including:
• The guilt we feel about something shitty that someone *else* does;
• The guilt we feel when we thoroughly assess a situation and make the very best decision we possibly can… right before circumstances change and render our decision complete shit;
• The guilt we feel when we inconvenience someone else without meaning to do so; and
• The guilt we feel when we miss opportunities because of life’s constant and unpredictable challenges and demands.
Also on the list? The guilt of chronic and terminal illness.
Earlier this year, I suffered the first grand mal seizure I’d had in over six years. Afterwards, I wasn’t allowed to drive for a while or even leave the house that much. This made me feel isolated, unproductive, and… guilty. Of course it did! I couldn’t do what needed to be done to care for my family. I couldn’t do what needed to be done to maintain my social relationships. I couldn’t do what needed to be done for my job.
I was a burden.
“Surely not!” I hear you saying. “It isn’t your fault that you have epilepsy! And it’s certainly not your fault that you had a seizure! It’s not like you forgot to take your medicine! It’s not like you intentionally sat in a room full of industrial strength fans and flashing lights! It’s not like you *wanted* this!”
No, of course I didn’t want it. But nevertheless, there I was. With it.
And I felt guilty.
I expressed these feelings to a cherished friend who was diagnosed with a stage 4 cancer just a few months ago. I don’t think I have to tell you that she knew *exactly* where I was at, and she knew it a thousand times more intensely. “I have apologized to my husband for the fact that [this cancer] came into our lives,” she told me, “and [the fact] that he is going to have to complete his life’s journey without me.”
Yes. You heard that right.
She’d apologized to her husband. For having cancer. Sounds crazy, right?
But it’s not crazy. It isn’t. For the chronically and terminally ill, guilt is just another symptom. I know this from personal experience. On what seems like a daily basis, I apologize to my husband for being epileptic. For being prone to kidney stones. For being full of old and busted girl parts. For having a gall bladder that doesn’t work.
For being less than.
I apologize for the fact that every year I have to spend thousands of dollars of our family’s money on copays, prescriptions, labs, imaging, and surgeries. I apologize because it seems like every minute of every day I’m moaning and groaning about some ailment, some pain, some chronic complaint. I apologize for not being able to be the healthy, present wife and mother that I want to be.
My husband doesn’t demand these apologies, of course. It’s just that I feel obligated to say them. They tumble from my mouth before I can hope to stop them, even when I know that they’re the last thing he (or anyone) wants to hear. They are unrelenting. And as we all know, continuous apologies that are unsolicited and unwarranted start to wear on people.
But I can’t stop.
So why am I telling you all of this? Why am I telling you about all of the guilt and shame that I (and my ill brethren) feel about a circumstance of life we can’t control? Honestly, I don’t know. Maybe just to explain how the chronically ill can and do feel additional pain beyond just being physically sick. And to assure the world that we are fully, acutely aware of the inconveniences and difficulties that go into being one of our family members, friends, or other loved ones. That we already know that it sucks.
And it sucks for us to know it sucks for them.