The Saddest Guilt of All

Sarah del Rio
Written by Sarah del Rio

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.

Or cancer.

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.

About the author

Sarah del Rio

Sarah del Rio

Sarah del Rio is a comedy writer whose award-winning humor blog est.1975 brings snark, levity, and perspective to the ladies of Generation X.

Despite being a corporate refugee with absolutely no formal training in English, journalism, or writing of any kind, Sarah earns her daily bread as a freelance writer and editor. She has also contributed to several anthologies, including I STILL Just Want to Pee Alone, the latest installment in the national-bestselling I Just Want to Pee Alone series.

Sarah contributes regularly to BLUNTMoms and has made frequent appearances on The Huffington Post Best Parenting Tweets of the Week List. She has also been featured on Scary Mommy, In the Powder Room, and the Erma Bombeck Writer’s Workshop.

You can also follow Sarah on her blog est.1975 and on Facebook and Twitter.

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36 Comments

  • Wow. That’s a lot to deal with. I’ve read your other stuff so I know it must be your sense of humor that gets you through. Thanks for sharing this.

  • Guilt. That one emotion that can send us into a depression or even lead to worse health problems. Keep yourself surrounded by people that do not make you feel insecure. Keep hanging in there. Thanks for sharing this!!

    • Maggie, my love – Thank you. Fortunately I have a HUGE support system, both close to me and afar. People who make me feel insecure don’t last long in my life anymore, now that I’m middle-aged – I know what’s important in life and shed them like snakeskin <3 Keep reading and thanks for all of your support.

  • Your warped (and I use the word warped lovingly) humor and hilarious outlook is your way to ‘pay back’ or make up for the apologies that you feel are necessary (but really aren’t) so stop feeling guilty for your chronics and just keep being so funny and loving. And, thank you for sharing a serious side of you.

    • Thanks so much, Pattie. I don’t always comment on your blog but I always read. I like following the lives of all my new blog friends – they are a big source of support these days. And it’s nice to have Internet buddies that I can talk to from bed 😉

  • My dear friend, this is beautiful, raw, honest, and freakin’ spot on.
    The guilt, especially during flares, can weigh heavier that the actual illness and how fudged up is that!?!
    Thank you for saying this and saying it so well.

  • I am going to drive across town and hug you. And bring ice cream that is gall bladder-friendly. I’ll even scoop up Tiny in backpack and take her along too.

    Many hugs, friend.

  • I have epilepsy as well. At any given point, I can have a seizure. And when I do, it’s a grand mal and petite mal at the same time. My seizures have the potential to quite literally kill me. But yet, I’m still here. I’ve been lucky enough to be seizure free for almost 4 years now. But every day I’m scared that I’ll have one. Especially being 31 weeks pregnant with my first baby. I’m a high risk pregnancy because if I have a seizure, I could go into preterm labor. That’s not what I want at all. So the whole time, I’ve carefully watched myself, making sure I don’t do anything that could potentially trigger a seizure. I take my pill twice a day like I’m supposed to. It just kills me. Some things I would find fun, I can’t do. It’s definitely hard.

    • I know how nerve wracking being epileptic and pregnant can be. You’re constantly worried about what may happen and the potential risks to your unborn child. I am thinking of you and have my fingers crossed for a safe and healthy delivery for both you and baby. Xoxo

  • I also have chronic back pain and have also felt guilty more than I would like to admit. I’ve even apologized for being pregnant with excruciating pain in my third trimester. I wish we could rid ourselves of this guilt. I wonder where the route lies.

  • I have what’s either idiopathic seizure disorder, or epilepsy (depends on who you ask). I had my first grand mal seizure at 16 weeks pregnant with my first child. I had several more after that, even though I was on anti seizure meds (pregnancy = increased metabolism = medicine metabolizes faster too). However, when I wasn’t pregnant, I didn’t have seizures, and haven’t since my last pregnancy. I had one grand mal seizure with my twins, and none with my daughter. But I live in fear that I will have one again.

    I’ve been fortunate not to have too many other health problems, but have struggled with depression since I can remember. I have always felt the need to apologize to everyone around me for sometimes being unenthusiastic about life. I’m sorry–it’s not that I don’t want to come to YOUR party, it’s that I don’t want to go to ANY party. It’s not you, it’s me. And I feel bad about that.

    So, you know, I guess I hear, sister.

    • Qwerty- It sounds like your seizures may be related to hormones. Is it possible that the increased estrogen/decreased progesterone during pregnancy is causing you problems? Not that it matters overly much – it is what it is – the important thing is that you are seeing a neurologist and carefully watching your medications.

      Write me sometime through my site or through FB and I’ll give you my direct email address. I’ve been epileptic since I was 17 so I know how hard it is, and all the fear/stress that goes with it. I’m always willing to lend an ear 🙂

      • Years later my OB/GYN told me that, in fact, pregnancy (for reasons that aren’t completely clear, but which are probably related to hormones) lowers seizure threshold. Which is what freaks me out, because what happens during menopause when my hormones go wonky again? I guess I’ll find out. Isn’t it fun being a human chemistry experiment? 🙂

        Will do! Thanks!

  • I’ve dealt with migraines since I was 7 (that’s just over 30 years). They became chronic and almost daily in my late 20s. Although my health has improved greatly with the help of good docs and good meds, the guilt never seems to waiver. In fact, now that I’m a wife and a mom, the guilt is on steroids. I am so, so glad that you wrote this. I thought I was alone in my crazy guilt spiral. Seriously, thank you.

  • Well this is just the shits and I’m so sorry, 1975 (I was also established that year). You hug me every day with your words and now you should send me your address so I can plop myself at your front door and dole out the close contact kind.

    You’re sharing this for the me toos. So that you know you’re not alone and other’s can also feel less isolated, guilty, and crazy. I’m proud of you for sharing this. It’s a vulnerable place to sit. I’ll come sit with you.

    I love you.

  • Est 1976 here, but I think you actually reached into my soul with that one. So damn true. As someone with a veritable laundry list of chronic illnesses I feel this every day. Oh, and let’s not forget the side order of shame. Let’s face it, if blood’s not gushing, bones aren’t broken, nobody gives a crap. The amount of times I have had to hear ”oh, but you look fine ” makes me want to punch them in the face or drag them into my body for a bit of Freaky Friday fun. I used to be so embarrassed and only recently been able to start to write about it. Actually Bluntmoms, published it (My body hurts) if you’re interested. Girl, I hear you, and I got your social media back! Well written, us crazies, cripples and degenerating bodily rejects got to stick together.

    • I am interested. Link me?

      Thanks so much for reading and sympathizing. Empathizing. We do have to stick together. There’s so many men and women out there who suffer through every day, expected to do so with strength and a smile. But it’s killing them to do so. And they feel so guilty, and so “less than.”

      Thanks for reading 🙂

  • Currently up to my eyeballs in guilt right now. 2 awful pregnancies (medicated and bed rest kind), battled and overcome anxiety induced gastro issues, one dislocated knee on our wedding day and am now in the middle of 2nd dislocated knee on best friends wedding day (think I’m allergic to weddings and dancing). Hubby is amazing, but the kids get to me. My oldest has experienced so much of my illness and me missing out on things in her 5 short years and it slays me 🙁

    • Hear you on the awful pregnancies and the gastro issues. I feel the same as you about the kids. I wish I could be there doing anything and everything they want to do. But like yesterday – I told myself I was going to be SUPER MOM. And I was. But then today I was exhausted and useless. And I probably will be tomorrow too. It’s a “one step forward two steps back” kind of deal, all the time. It totally sucks.