Healing Isn’t Linear

In 2021, I met a chiropractor who would change my life. After years of being diagnosed with fibromyalgia and yet not getting anywhere with treatment, I’d had it in the back of my mind that I might have something else going on. One of the things I suspected was Ehlers Danlos Syndrome. I mentioned that offhand to the chiropractor I was seeing, and she connected me with another chiropractor who specialized in EDS and had it herself. That very next week, we went over the Beighton criteria and I passed. I wouldn’t get my “official” diagnosis until a few months later, but that launched my journey into learning more about EDS and how it applied to me. It was crazy to me that after years of searching, I finally had the correct diagnosis that, as I learned more, fit me perfectly.

The chiropractor who went over the Beighton criteria with me told me that she could help me. She said I could get better, words I had never heard from anyone. And truthfully, I had given up on ever having improvement or “healing” at this point, because it got too painful to hope.

That didn’t mean it was going to be easy. She said it would take “a hell of a lot of work.”

“How long will it take?” my mom asked.

“Maybe years,” she replied, in grim but genuine honesty.

I was daunted. I didn’t want to wait years, and I didn’t want to put in even more work after fighting for so long. But at the same time I was inspired and motivated — you mean there’s an actual possibility of getting better? I’ll do anything.

It’s odd how those two truths coexisted in my brain. I think that’s partially because, in all honesty, I could not even conceive what healing would look like for me, what “getting better” meant. Did this mean getting a job? Moving out on my own? Milestones that were out of reach were suddenly back on the table again. Becoming a person I thought I never would be was back on the table. It was terrifying. I don’t think we talk enough about the fearful aspects of healing. It’s a good thing, but it can be so scary to move out of the only state of being you’ve ever known.

I don’t think we talk enough about the fearful aspects of healing. It’s a good thing, but it can be so scary to move out of the only state of being you’ve ever known.

My chiropractor was not deterred. She told me that we could go at my pace, implementing small steps. We started with KT tape, self massage, taking an Epsom salt bath every night. Eventually we upgraded to small exercises. For a while, my most core exercise was simply belly breathing and it counted as my workout if that was all I was able to do. Chin tucks, serratus punch, calf raises. Small steps. I was so, so excited when I was able to start lifting soup cans. They may not be barbells, but I’ve always wanted to do weight lifting and here I was, doing something I never thought existed in the same universe as me.

I got a rollator, which enabled me to walk pain-free on some days and farther than I could without it on most others. I will never forget the first walk I took without it, when the pain in my hips and knees was mysteriously absent. You mean the breeze exists? And there’s birds in the trees? I didn’t know the sky was so blue. The pain had blocked all of that for me. With its absence, it was like the world was amplified and I was seeing it in a whole new way. Walking has somehow become even more possible for me — I recently upgraded to six minutes on a walk pad, which is something I never thought I’d do. And we recently revisited a spot in Garden of the Gods, where I walked further than I’d been able to the previous year. These milestones, while not typical for my age group, make me feel something I can’t really put into words, because I never thought I’d have them.

But getting here wasn’t always easy. It took me about a year to get to a point where I was able to find a consistency and find joy in working out. Some of it was a struggle with my ADHD and implementing a routine. Another part of it was that for so long, movement had been a pain trigger. I had genuine trauma from physical therapists pushing my body too hard and not listening to me. That trauma is what kept me from working out some days, and I wasn’t able to just immediately jump into a fitness girlie lifestyle because of that. I had to just keep showing up, keep trying, keep reminding my body that movement isn’t always fearful or dangerous.

Trauma aside, for the ADHD part of this, I eventually motivated myself with bribery. “If you work out every single day this week,” I said to me, “you will be allowed to buy an enamel pin for your collection.” This little burst of dopamine and celebrating my progress really worked for me and got me past my hump — I don’t buy pins anymore, mostly because it’s an expensive habit to keep up! But it was enough to get me started.

I still struggle with consistency, especially during flare weeks (such as this one). I once saw someone on Instagram say that focusing on persistency over consistency is important. If you miss days, that’s okay, as long as you keep coming back to it. That was super clear to me this past Christmas when I shared about my workouts with a family friend. She complimented my consistency, saying it’s not easy to keep showing up like that. I blinked back tears as it hit me for the first time how right she was. For over a year, I’d been showing up for myself every single day. I’d been beating myself up for missing days, but why wasn’t I proud of myself for showing up over and over? That changed the game for me.

I once saw someone on Instagram say that focusing on persistency over consistency is important. If you miss days, that’s okay, as long as you keep coming back to it.

I was reflecting back on healing and my journey recently. Sometimes it’s hard for me to see how far I’ve come because there’s so much I still wish was improved. I still itch nearly constantly, and dysautonomia and headaches are big pieces of the puzzle yet to solve. But then I was reminded of the phrase “healing isn’t linear.” In the past, I’ve had trouble understanding that concept because I still tried to make it linear in my head — “Okay, so it’s not a bar graph that only goes up, but it is still a line graph that goes up and down with crazy spikes every once in a while.” I even made a sticker with that as an illustration. As much as I still love that sticker and think it works on some level, I don’t think healing is exactly like that. I think sometimes it’s more of a tangled ball of yarn, a constellation of stars, a road trip with a million different stops. As much as I wish there was a one-step solution, an easy Point A to Point B, there isn’t, and healing can be just as complex as the circumstances that got us there in the first place. Untangling that knotted ball of yarn isn’t easy, but it’s more than worth it. (My fellow crocheters will understand.)

I don’t think healing is exactly like that. I think sometimes it’s more of a tangled ball of yarn, a constellation of stars, a road trip with a million different stops.

I hope as you reflect, you’ll acknowledge the complexity of healing and give yourself credit for those moments that may seem small but really are the big ones. Life isn’t linear, neither is healing, and your journey is so unique to you. I’m proud of you for living it.

With love and spoons,

— Sky 🌱

related post: I’m So Proud of How Far You’ve Come

Enjoyed this post? Subscribe to Chronic Positivity’s Newsletter to get these posts delivered straight to your inbox.