Why the Spoonie Parenting Struggle is Real

All parents deserve a gold star for effort. Seriously, spoonies or not, parenting is not an undertaking for the faint of heart. However, add on chronic illness with its ugly cohorts of chronic pain and fatigue, and parenting suddenly becomes an Olympic sport in endurance and humility.

In particular, I’ve found that navigating the playing field of grade school social requirements to be especially exhausting and fraught with anxiety. Since my diagnosis of lupus and fibromyalgia a few years ago, I’ve learned a little more about how to pace myself and conserve my energy. With my daughter in school and after-school programs, I’ve been able to give my body some of the rest it needs. I don’t have the blessing of an extended family or social support network, so all duties rest squarely on my or my spouse’s shoulders.

Now my lovely girl is getting older though, and trying to manage both, school volunteer requirements and engagement in the play dates that she both needs and deserves, has become a new beast to tame. I’m still not comfortable or sure how to tell her school that I need accommodations for volunteer work, or that I may not be able to keep a scheduled obligation due to a sudden flare up. I’m a young mom who looks healthy enough, and I’m traumatized from facing years of doubt and disbelief when my symptoms first began to manifest. Revealing an invisible disability puts me in a uniquely vulnerable position that hearkens back to painful memories of doctors and family belittling my symptoms and suggesting that it was all in my head.

Ultimately, I believe I’m scared of being labeled a “lazy mom,” a mom who is making excuses in order to selfishly avoid my responsibilities. I don’t want to disclose my health conditions, which are of a very personal and sensitive nature, in order to be able to take part in modified school activities. Oh, how I both envy and admire the parents who take on double duty as homeroom parents and activity coordinators! My sad, secret truth is, that many days of the week, it’s a real struggle just to get my daughter to school and back.

Play dates are another source of anxiety that is caused by my conditions. Due to brain fog, fatigue and medication side effects, driving is a challenge. Luckily, I live right down the street from my daughter’s school so getting there and back is something I can do no matter how sick I may be. However, living in a large city makes it difficult to get to a friend’s house safely if my spouse isn’t home to drive. My anxiety kicks into overdrive: what if I start getting a migraine aura, will I be able to pick her up? Will I have to reveal that I’m too sick to drive, will I have to ask for and subsequently explain my need for help?

Hosting play dates is a frightening prospect as well. Most of my fellow spoonies can attest to the effect that illness has upon our ability as a housekeeper. Although everything is clean enough, my house is rarely ready for company. In my days before lupus and fibromyalgia, I was a meticulous housekeeper. Now, I just try not to focus on the army of dust bunnies and cobwebs that gather in the corners. I’m embarrassed to have children and their parents over to my spoonie-styled home, but it’s often the best option I have in order to avoid driving my daughter when I’m not well enough to make it through traffic.

Socializing is difficult with brain fog and severe pain. I’m always fearful that I’m dropping the ball, so to speak, when chatting with parents. I forget what I’m saying, lose track of the conversation and fish for words that I just can’t quite remember. These are common problems I face daily in my solitary life. Trying to socialize as a parent makes me examine my interactions under a microscope when I’m just trying to put my best mask of normalcy on display for my daughter’s sake. I’m not close with any of her friends’ parents. From past experiences, I’m afraid of being viewed as an over-sharer, and always scared of being disbelieved or viewed as a malingerer. Certainly, chronic illness has shaped me into a private person, so closed off and solitary that I fear the vulnerability that comes with creating new friendships.

Overall, parenting with a chronic illness has exacerbated my anxiety and depression. It’s a constant struggle of feeling not good enough, which I think all parents face at the end of the day.

Sick or well, we all love our babies more than anything, and we’d all do anything to make them happy, healthy and whole. I feel like I simultaneously have something to prove and to hide because of my health, but it’s a battle that is taking place only in my head and my heart.

Spoonie moms and dads, it is so hard to give our children the well-rounded life they deserve. I hold my daughter closely every night at bed time, and just let her know I’m doing my best. Tomorrow’s another day, and whether I’m facing a school function or hosting a play date, I’m giving it my all. I’m here for my daughter, and lupus and fibromyalgia won’t stop me from giving her my best. Even if my 100 percent looks to be a little less than that of able-bodied parents, my baby and I know we’re just trying to live our best lives under the heavy burden of chronic illness.