The Guilt I Feel as a Mom With a Chronic Condition


By all of my measures, today is a bad day.

My son had a nightmare last night. His screams through the monitor brought me to my feet and into the hallway before I was even aware of what was happening. It wasn’t until I bent over his crib to pick him up that I realized how much pain I was in.

He wrapped his tiny arms around my neck and held on tightly as I rocked him back to sleep. My heart ached for him as he tried to calm down, but I also felt overwhelming guilt. The burning sensation in my right side made me slightly desperate for him to go back to sleep so I could get back in bed.

An hour later, as he slept soundly in the next room, I was curled up in a ball, rocking myself and willing away the pervasive nausea and pain that swept over me. Later still, I finally admitted I needed pain meds, and hobbled downstairs to get them. I winced as I swallowed them, knowing they would make me groggy when he woke up. Mornings are my favorite time with him, when he is still clingy from sleep but so happy to curl up on the couch with me. I hate being drugged in the morning.

I remember my mom having her own rating systems for days when she was fighting cancer. Bad days meant she was tired or in pain. Great days were days when we went out and did things together. The worst days, well, those were usually in the hospital.

 

I don’t have cancer. I have a very rare (and a very unfortunately named) chronic condition: sphincter of Oddi dysfunction. Only a handful of doctors can treat me. Almost no one has ever heard of this. Unlike many others, the surgery to address my rare condition did not eliminate my symptoms wholly. I am on a lifetime of a restricted diet, plus very expensive medication I have to take before I eat anything.

Compared to my mom, I am lucky though, as my scale for the type of the day has room for far more subtlety. Great days mean I didn’t feel any pain, and the only sign of my condition was the need to slip some pills before each meal that I chose with my stringent dietary restrictions in mind. Bad days are days with pain, particularly pain I didn’t earn.

I have a scale for pain as well. No matter how horrible, I rank the “earned” pain as far more tolerable than the “unearned” pain. “Earned” pain means I had to have those French fries, even though I knew what would happen, or that I am traveling, an activity I love but also one that tends to upset the delicate balance of my stomach. “Unearned” pain means I cannot trace its source. These are the days when I cannot find a cause, even when I go back through the food log I keep to count my fat and protein.

Today is the worst kind of day. I am consuming only clear liquids in an attempt to calm my stomach. After my rough night, I bustled my son off to daycare early so I could get a few more minutes of sleep in before work. Thus, in addition to being hungry and in pain, I am wracked with guilt and the annoying questions of whether someone who lives with my condition can be a good mom.

I am also so very tired – the kind of tired that comes from weeks on end of barely eating to appease my stomach. This is the kind of tired that comes from constant pain and constant worry.

I think the worry piece is the hardest to make anyone else understand.

I worry constantly about taking pain medication. Having watched someone descend into addiction that began with prescription opiates, I am now terrified of them. Every time I take one, I worry about following that path and so I fight the need for them.

I worry about what people who see me take them think. Since travel aggravates everything, my in-laws generally see me during some kind of flare-up. I worry about what they will think when they see me slip my pills into my mouth before every meal.

I worry about what happens if my pre-existing condition no longer has to be covered. We have great insurance and still spend nearly $2000 a year on medication for me. I worry I will bankrupt my family if one of us ever loses their job.

I worry my coworkers think I am just a whiner when I have flare-ups like this one that just don’t want to end. I worry the people who know think I am a faker when they see me opt for the rare “cheat” meal, even though it will earn me pain.

I worry a lot about what people think, even though I shouldn’t. Since my condition is rare, I usually try to avoid talking about it so I don’t seem to be oversharing. I accept lots of compliments on my restraint when I refuse ice cream at social functions. I see lots of inquiring looks when I turn away the wine (even when I really want it).

When I do have to talk about it, I just say “my stomach is acting up.” This invites all manners of unsolicited advice. I’ve been told to drop gluten, dairy and soy, or try acupuncture or going to the gym every day, all by people who heard “stomach” and assumed my issues were comparable to their own without questioning further. I worry they think I am horrible when I snap at them that I know what my problem is. When you’re in pain, though, sometimes it is hard not to snap.

My biggest worry, though, is for my kid. In some respects, my condition will help me raise him into a healthier lifestyle than I ever had before I got sick. I am so cognizant of what nutrients make up different foods that I get to focus on the whole family eating well. We walk every night as part of my effort to control my weight. And, in all honesty, excluding flare-ups and the worry, this condition doesn’t impact our day-to-day very much at all.

But there are days, like today, when I cannot give him my focus because I just hurt. There are days when I am tired, have been in pain for weeks on end, and feel like I will never feel “normal” again. There are days I have to work really hard to focus on him instead of my self-pity and fear. There are days when I cannot let him use me as a jungle gym because he might press in the wrong spot and cause me pain. There are days when I can barely pull myself off the couch to put him to bed, even though I want to.

Today is the worst kind of day, when being in pain makes it so hard to be the kind of mom I want to be.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ingram Publishing.

TOPICS
JOIN THE CONVERSATION

Related to Sphincter of Oddi Dysfunction

woman lying awake at night

Confronting My Thoughts When Painsomnia Keeps Me Up at Night

It’s 1:00 a.m. and, having retired to bed two hours ago, I’m back downstairs writing this. Sleep is a strange and erratic bedfellow. Sometimes I can’t get enough of him, yet at other times he eludes me completely. I am 54 and have chronic illnesses (yes, plural – it seems that over the last three [...]
Multi-exposure of woman sleeping and waking up.

When You're Living in a Constant State of Sleep Deprivation

Wake up. No, I don’t just mean wake up. I mean wake your brain up. Wake your brain up on time – that means early enough to be able to lay there for a couple hours until the rest of your body wants to follow (that part won’t happen most days). Get in the shower. Don’t [...]
Young woman sitting on grass, cityscape in background

Can't Stop: Things I Worry About as Someone With Tourette's Syndrome

I used to be afraid of the police. I’ve had this dream in the last few nights of police coming to where I live because of my yelling. I have Tourette syndrome and I yell “stop.” It’s a tic. It’s a tic I can only control for so long; I hold it back a lot. [...]
22 signs you grew up with chronic pain

22 Signs You Grew Up With Chronic Pain

As kids, we were just coming into contact with the world and beginning to learn about the way things work – including our bodies. However, if you grew up with a body that was constantly tired or in pain, you might not have recognized at such an early age that these symptoms were unusual. When I was in [...]