Living Spinefully

Hello friends,

I’m not going to lie to you all, it’s been a really challenging week for me, physically and emotionally. I am in a season of my life of a lot of changes right now, and new and unexpected things keep coming up. Pain has been running high, patience low, and anxiety off the charts. So I haven’t been very mindful this week. I haven’t even wanted to be mindful this week; I’ve wanted to dig my heels in, throw a temper tantrum, and complain about how unfair life is. I’m trying to breathe through this – reminding myself that I am trying the best I can, that the nonjudgmental attitude I’ve been practicing applies to myself and the process too, but it’s been hard. Thank you, as always, for taking the time to read my words as I untangle my thoughts.

Trusting with an Invisible Illness

In August 2008, my family moved from our tiny country village to a suburb of Dayton and I started attending a new elementary school for 6th grade. At that point, my first surgery was just three months away and, between the pain and the anxiety, I thought about it every single day. And although I had support from my family and old friends, I suddenly felt like I was carrying this overwhelming weight alone as I faced a classroom of strangers. So during the first week of school, I met a friend on the playground and told her about scoliosis and my upcoming surgery and probably the degrees of my curves and having to miss school and wearing a back brace and how afraid I was (sorry, Jessica). I look back at this moment and cringe a little bit for my lack of healthy boundaries and being overly trusting, but I also try to remind myself that this overshare came out of a place of trying to get my needs met during a time when I desperately needed support.

Since this pre-teen overshare, I have “come out of the closet” as a person with an invisible illness probably dozens of times in my life, and honestly, I’m still trying to figure out how to do it best. For a while in my healthier times, telling someone I had scoliosis felt like sharing a bit of random personal trivia, like telling someone your birthday or your middle name. As chronic pain and activity restrictions have become larger and more impactful parts of my life, it’s been hard to figure out what, how much, and when to share this detail about myself.

In my experience, trusting with an invisible illness is hard for a couple reasons. I didn’t personally know other people who have scoliosis and have been through spinal fusion until last fall when I found them on social media – at 25 years old. I think it’s naturally easier to trust people who’ve been through similar experiences because it reduces the risk that they’ll react poorly or “won’t get it.” Living with an invisible illness is so lonely, in part because it’s hard to find people who truly understand. Additionally, trust is hard because people can’t see my illness. You don’t know that I am in pain or am concerned about a new symptom or am struggling to do something unless I tell you. If I had a cold and sneezed, you would pass me a tissue. But if I’m having a bad pain flare up and need to cancel plans, I might just seem flaky (especially because my pain levels change all. the. time., and what I’m able to do one day, I might not be able to do the next). In some ways I am very grateful to have easy to understand x-rays that I can show people because it takes some of the pressure off of me to “seem sick enough.” It makes my invisible illness a little more visible.

Would I actually be a therapist if I didn’t love a good iceberg metaphor?

So there are a couple of places I want to go with the iceberg symbolism (sorry for the puns, I’m having a good time with them). First of all, I get to control the level of the water (am I the moon?!?) To some extent, I can raise the tides and hide my story if I need to. I realized after my last surgery when I walked with a significant limp that I actually missed the previous invisibility of my illness because I suddenly felt exposed. But truthfully, I didn’t (and don’t) owe an explanation to anyone who hasn’t shown me that they have earned that trust. And for the people who have put in the leg work, I can also lower the tide and let them into my world. Secondly – what is a titanic-sinking-size iceberg to me might be a “bergy bit” (I just looked this up, it’s a real term!) to someone supporting me, and that’s actually a good thing. Scoliosis at times feels like an insurmountable, life-sinking obstacle to me. And if it felt that way to the people I lean on for support, they wouldn’t be able to help keep me afloat.

The people that have earned my trust have done so by showing up – with words of comfort and support, with tacos and ice cream, with offers to bring me tylenol or to be on stand-by to drive me to the hospital, and at times by telling me that I’m catastrophizing and spiraling. Telling someone about my scoliosis is telling them a part of me, but it’s not telling them about all of me. It does not overshadow me, serve as my warning label, or somehow make me broken.

If any of this resonated with you, please send me a message on instagram or shoot me an email at lauramchase20@gmail.com. Reflecting on how lonely chronic illness feels at times, I want to be able to connect with others about their experiences. -Laura