Why Socializing Can Be Difficult When You're a Parent With Chronic Illness

In my journey with chronic illness (POTS) I have come across many generous friends with many thoughtful offers of help. Friends who have invited me over knowing I was tired of being solo that day, friends having play dates and wanting my girls to feel included. It may surprise you to hear this… but it’s not often I will accept an invitation to leave my home, and I feel it’s time to be open about this.

First, kudos to you for thinking of me, possibly even reaching out in hopes of easing my pain. Ideally it would be wonderful to get out of the house and be in a space where someone else will clean up for us. That truly is alluring, let me assure you, but this comes with a price as well. If you are familiar with spoon theory (created by Christine Miserandino), the situation becomes clearer.

If your energy were illustrated with 12 spoons, you only have 12/day… how would you spend them? Menial things like getting out of bed, or taking medicine at regimented times, or potty training may take a whole spoon on their own. Which is fine, because you have 11 more spoons. But then when you factor in other self-care practices like showering or making phone calls to doctors, we find ourselves already up to four spoons for the day. Depending on your circumstances, you may have plenty of social energy, but if you physically exhaust yourself it doesn’t matter.

As a parent with chronic illness, my daily responsibilities alone use quite a few spoons. If everything goes smoothly, I’m down to one spoon by dinner. But that’s not usually how it goes. Things like doctor visits and meltdowns occur; these events automatically absorb more spoons due to how involved they are. So while I am tired, I am also becoming fuzzy-minded and fatigued. I cannot think clearly, I’m overstimulated and probably even have blurry vision. These tasks do not merely take my energy, they increase my symptoms. When it comes to chronic illness, when you run out of spoons you cannot push through without great risk or recklessness.

So back to the invites and offers for help. Dressing myself and three children, packing safe snacks, checking diaper bag for diapers and epi-pen, buckling all of us, driving and answering questions about where we are going, etc… my actual body exhausts itself to a point of being unable to think clearly. When my husband is present I delegate a lot of this to him, so I can save spoons for our friends, but if the place we are going requires me to watch my kids closely, I won’t have enough spoons to do this. This can make me anxious when I’m out and about, due to fight or flight mode kicking in. So many little people to keep track of, each with tailored needs, also trying to be social and interact with loved ones. Even if my children are low key (which is rare, and that’s their childhood right), my attention is divided the whole time = spoon.

If you are doing the spoon math, by the time I get to where we are going I do not usually get enough recharge time while there to have spoons left when I get home. It’s not about “getting something out of it” as much as it’s about not buying a one-way ticket. It’s not just about having pleasantries to offer my kids at bedtime (though that’s a bonus), it’s about monitoring fevers, food allergies, nightmares, baby feedings, etc… late night activities that require a responsible eye. But at that point my vision is blurry and my arms are becoming limp.

So now I just sound like a party pooper who doesn’t socialize… this isn’t entirely true. I am more than happy to bring friends into our home, it’s actually not a burden to do so. We make many lifestyle choices that make it manageable, even if monkeys scattered toys all across the house… it’s a disaster I can handle. We keep healthy snacks in our home for added energy and we have lots of child-proofing so I can sit down a lot. The catch? I do not have energy in the evenings. Most of my socializing happens in the morning, or not at all. Not all of our friends are available at this time, and we understand. There is also the option of just sending my children to socialize without me, but that’s another post all on it’s own.

In short, there isn’t really a hack to save spoons. Due to my autoimmune disease, they don’t roll over. They are all gone at bedtime, regardless of self-care. Our needs make us a little high maintenance socially, so we may choose to not feel lonely. We may seek out outlets that meet our needs and we exercise understanding when our needs come between us and seeing our friends.

Having chronic illness has completely adjusted my lifestyle and the landscape of my day-to-day life, but it will not stop me in my tracks. I am hopeful that in every season we will be provided for with a little intentionality and a whole lot of grace.

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

Getty Image by Liderina