Challenging the Guilt From Canceling Plans Due to Chronic Illness

As I muddled around the house one Saturday morning a few months ago, I couldn’t stop thinking about the party I’d missed the night before. I’d been so excited about it. I had a new outfit, was ready to catch up with friends and had done my best to conserve energy the whole week prior. But when the day of the party came, I woke feeling extra sore, stiff and terribly fatigued. I took all the steps I could think of to try and feel well enough to attend, like take an extra couple of Aleve, an Epsom salt bath, a couple doses of vitamin B12, eat high protein food with low carbs and drink lots of water. But in the end, after getting ready I was exhausted and in tears. I was too tired to drive, and the thought of the energy it would take to socialize was overwhelming. So I made my apologies to the hostess, changed out of my new outfit, put on some sweats and my favorite t-shirt and curled up to watch a movie.

Guilt is a huge part of living with a chronic illness. But why? Why would anyone feel guilty about being sick? Believe me, it was an unexpected but a common feeling for those with chronic illness. Guilt lingers and hovers with each agonizing decision about which events I can attend successfully. I feel guilty for not being there, guilty for always being “sick” and guilty because I chose me over my friends. I worry I’ve let someone down because of not feeling well enough to attend an event. And in reality, I probably have. I rarely miss the big ones: birthday parties, weddings, christenings, graduations or even the odd band debut. But I am regularly reshaping each of my days as I juggle how much I think I can tolerate so I can still have a productive day today and there not be consequences for tomorrow. Or worse, the dreaded lingering consequences in which I go into full flare, and the next week or two become excruciating.

Since I work from home, I spend quite a bit of time alone. That’s not a complaint, as I don’t mind it. That said, it gives me a lot of time to think, and if you were to ask any of my dearest friends, they would say Erika does not need more time to analyze anything! I was the only child in a single parent household when I was growing up. And that parent, my mother, was a social worker and then a therapist. During my formative years, my mom practiced right out of our home. Thinking and analyzing is the family business, you see. We often joke I have psychological training by osmosis. Ha!

As a result, I am fascinated by cultural biases and behaviors. Sometimes I hate that I analyze everything, and sometimes I’m grateful I can ask myself the hard questions that many people won’t. So here I am muddling around the house on this Saturday morning, feeding the dog, wondering how the party went, who I may have missed seeing and so on. I was asking myself the hard questions, again.

And then something occurred to me. I began to ask myself why I was feeling so guilty. Am I in terrible pain? Yes. Does it feel like I’m walking through knee-deep mud? Yes. Am I terribly worried of what my friends think of me since I wasn’t there? Yes. Do they think I’m a hypochondriac? Who knows? But what does that accomplish? Geez!

Then it hit me. While I do care what people think about me, I try not to let it shape my life or my actions, or prohibit me from doing what’s right. The truth is I don’t feel guilty because my friends might think these things. I feel guilty because I feel this way! It is me who has a cultural bias towards illness and pain. And if I have a bias, how can I expect others not to? I know you may be asking if you know you’re in pain, why you would feel guilty about staying home. But when you must miss things regularly because of pain or severe fatigue, it’s hard. It’s exhausting.

Almost everyone has a coworker, friend or family member who is rarely feeling well. Maybe they’ve missed a few too many days during a big project at work or even taken a sabbatical, leaving more pressure on the rest of the team. Our society dictates that we always be productive. Corporate profits, shareholders and competition make for a world in which we feel we must always be doing more, or better. And it’s that productivity which gives us worth, accolades or an increased salary.

On the flip side, we have learned that anything slowing us down for longer than a few days isn’t “normal,” and we must fight through it or take medicine to address the symptoms. Exhaustion now provides a sense of pride, to an extent. But when that exhaustion never goes away, when there is pain in places I didn’t know could have pain, and I’m doing my best to keep up with the work and social life — something’s got to give. And taking on guilt while trying to heal makes healing a difficult process.

So now when I begin to feel guilty because I didn’t get as much done as I’d like, or I decided to skip a networking event so I can go to happy hour with a friend later in the week instead, I do my best to make the decision and move on. I also ask myself, “why the guilt?” Usually I find the guilt is based on expectations of what I should be doing or have accomplished at my age based on what society tells me. It rarely has much to do with disappointing friends, coworkers or family. It almost always has to do with disappointing myself.

Now I do my best to reframe the way I think of moving my schedule around or feeling exhausted for three days in a row. I remind myself I am learning a new way to live and look at things. So the next time someone calls in sick, ask yourself “why am I judging this person?” Then reframe it, release the judgment of others and of yourself, so you can heal. Guilt has no place as a partner with illness.

Follow this journey on the author’s Medium channel.