Meeting expectations while in an active symptom flare is an uphill battle
Just getting through an ordinary day is an accomplishment
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“Come on, Mom. It’s time for cheer practice.”
It’s nearly dinnertime, and after an already busy day as a mother of four, wife, homemaker, and self-employed woman, I get ready to head out to another cheer practice, where I volunteer as the assistant coach, feeling beyond tired.
I signed up for this position last spring, before my body spiraled into this monthslong roller coaster of flares involving Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome, and mast cell activation syndrome.
I was a cheerleader during my youth, and I loved the school spirit it mustered and the athleticism it required. It balanced my otherwise tomboyish, outdoorsy lifestyle. So naturally, when my daughter, who was also quite the tomboy in her younger years, decided she wanted to cheer, I was excited! She’s growing up too quickly, and I saw a chance to spend quality time with her doing something we could both enjoy.
At the time, volunteering seemed like a great idea, and honestly, it still is, but my body apparently has other plans.
Lately, I’ve been so incredibly run down that getting through an ordinary day feels like quite the accomplishment. I’m not talking about the kind of tired that comes from staying up too late or having a busy week. This exhaustion seems to have settled into my bones, no matter how much I rest. Between the searing nerve pain, joint stiffness, muscle aches, crippling fatigue, and other symptoms that come with my conditions, most days I feel like I’m in my 70s rather than my 30s.
And yet, from the outside, I look pretty healthy.
Invisible me shows up
That’s one thing that frustrates me about living with invisible illnesses. My appearance tells someone very little about just how awful I’m feeling — unless you have a keen eye for subtle changes in posture, guarded muscles, a clenched jaw, or incredibly tired eyes with little pillows of exhaustion formed beneath them.
Life doesn’t stop because I’m in a flare, though. I still have four children who need me, a household to manage, work responsibilities, and commitments I’ve made. Like most parents, my days are full, and I don’t always have much time to slow down. So when cheer practice rolls around, I gather my girls and head out the door.
I truly enjoy coaching. I love helping these young ladies become more athletic, improve their coordination, build confidence, and discover skills they didn’t know they had. It’s rewarding to watch their progress, and I especially love sharing the experience with my daughter.
But it’s been taking a toll on my health lately. I only have so many spoons (a metaphor for energy) in a day, and by the time evening rolls around, I’ve usually used them all up.
Sometimes I push myself anyway because I don’t want to miss out, disappoint anyone, or be the person who can’t follow through on something I’ve committed to. But the other day, I had to call out sick from coaching for the first time. I wasn’t contagious. I didn’t have the flu or a stomach bug. I was just so worn down from this prolonged flare that I couldn’t bring myself to go. I knew that if I went, I would push myself over the edge and crash into the same wall I hit this summer. Admitting that felt harder than calling out with an actual virus, however.
I know EDS is a genetic condition, and I know the symptoms I experience are difficult to manage. But I still worry about how other people perceive it. Will they think I’m making excuses or that I’m unreliable? Or just that I should push through like everyone else? I don’t enjoy explaining my medical history and I don’t want sympathy, or to appear to be complaining. I just want to go about my life without my health becoming the topic of conversation.
It’s a difficult thing to balance, though, especially when you want to be involved and follow through on your commitments. I’m still figuring out how to manage that balance. I don’t want to stop doing the things I love or miss opportunities to make memories with my children because of these conditions. But I know I also can’t ignore what my body is telling me and expect no consequences.
Some days I can show up and give it my all. Hallelujah! Other days, just getting through my normal responsibilities is about all I have in me. While I still struggle with the guilt of saying no, I’m beginning to realize that being dependable shouldn’t mean running myself completely into the ground.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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