Celebrating Self-Acceptance and Perseverance through Parenting with a Chronic Illness

Surviving: chronic fatigue, hair loss, chronic pain, anxiety, depression, nausea, dizziness, bouts of confusion and inability to focus, insomnia, memory issues, headaches, joint pain, etc.

Striving: a diagnosis! and treatment

How long have you been on your journey with autoimmune issues? While I haven’t been diagnosed, I’ve dealt with autoimmune issues for about a decade. At the very least, I’ve been dealing with something chronic for at least that long.

What was your turning point in looking to improve your health? Basically, now. This is a new journey for me. I’ve put on significant weight and have noticed that even light physical activity that I used to do easily exhausts me within minutes. As the mother of an active 6-year-old, I need to be able to walk alongside her while she scooters around town, sit on her bedroom floor for an hour and play ponies, carry her to bed when she falls asleep on me on the couch.

But I also do it for me. I miss looking in the mirror and not hating myself. What I see isn’t even an echo of what others see because whatever it is I’m dealing with has warped my own perceptions of myself beyond recognition.

And I miss having the energy to actively participate in my life.

What’s something you’ve learned along the way?

Something that’s been a rude awakening, but also freeing, is that what I’m dealing with is (mostly) invisible. It’s hard to offer others the benefit of the doubt when they keep nudging me to do this or that when I’m out of spoons or offer inane advice like smoothies and jogging, but the flipside of that is that what I am frustrated with myself for right now they don’t see.

I shaved my head because my hair loss became depressing. Others see a badass, someone who doesn’t care what others think, an artistic temperament, a free spirit. (And to some extent, they’re not wrong, even if I’ve lost track of her.)

I see dark circles under my eyes, thirty extra pounds, stretch marks, and patches of scalp. I see my calendar and all the events I missed out on. I see my daughter’s eyes when I let her know we have to head back inside because I’m just too tired to continue again.

I know what got me here, and I can hate it all I want, but here’s the thing: most people just see another human living their life. They meet you for the first time wherever you are in your journey, and that’s who you are to them. You see every moment of your own life, the behind-the-scenes exclusive; they see snapshots.

If they judge based on that, eff them. And honestly? I don’t think most bother.

What advice would you give someone starting in their autoimmunity journey?

Meet yourself where you are. It’s okay to want more and to work towards it, and the desire to improve your situation is crucial to seek out the support you need–but on those days where you just can’t? Don’t, and don’t feel bad for it.

What are you currently striving for?

Above all, a diagnosis and treatment–whatever that looks like. I have difficulty making it to appointments, and severe medical anxiety, so I know it will be a long road. But at the end of the day, having a diagnosis will give me a basis for making more informed decisions about my health.

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