Jessica Green Olifson

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1

I was diagnosed with scoliosis when I was in 9th or 10th grade. I wasn’t in any pain, but one day my mom was hugging me and noticed that one side of my back stuck out more than the other. So my parents took me to an orthopedic doctor and I was diagnosed. My curve was S-shaped, and because the top and bottom curves balanced each other out, I stood up straight and wasn’t hunched over or off balance at all. We were told that I wasn’t a candidate for surgery because my curvature wasn’t severe enough, and I didn’t need a brace because I was basically done growing and the curvature likely wouldn’t worsen. I remember being given some stretching exercises to do regularly, but that was it. I don’t remember anyone mentioning anything about pain I might have as I experienced age-related spine compression over time.

I’m not sure about the specific onset of my pain. I know by my mid-20s I was in enough pain that I was getting massages and seeing a quirky chiropractor who had developed his own therapy that worked on breaking up scar tissue and getting people in better alignment. I could write a completely separate story about this guy, but the point is the treatment did give me some temporary relief. (As an aside, the treatment also caused me to be very sore for a couple days after each appointment, so it did cross my mind that the relief I felt may have just been relative to the increased post-appointment pain!) It was through this man that I bought a fur-lined clavicle brace to wear around my apartment-- this contraption sort of held me in a stretching position that felt nice and maybe was meant to improve my posture, Anyway, at that point I was up for trying things to address the pain. I knew that my pain was probably going to be a chronic issue-- as in my scoliosis wasn’t going to go away-- but I didn’t think of myself as a person dealing with chronic pain.

2

It’s probably only in the last 3-5 years that I’ve actually started using the term “chronic pain” in reference to myself.. I think I’ve known that’s what it was for a long time, but I hadn’t named it. Maybe it’s that even though professionals have told me over and over again that my pain is something that isn’t going to resolve and will just need to be managed, I don’t remember anyone saying those specific words-- Chronic Pain--- to me. Was I waiting for a diagnosis from someone else to validate it? Was I not wanting to admit it to myself because it sounded too depressing, too scary, too wimpy, too dramatic? Was I brushing it off in order to protect my parents, who to this day feel guilty when I mention my pain because they wonder if they should have done more sooner? Was I denying my reality to protect myself? Even in deciding to participate in this project, I found myself questioning whether I belong, whether I “count” as someone who experiences chronic pain. 

At this point in my life, I know the truth and I continually work on accepting it; I know and I feel how real and how impactful my pain is to me. I know that each day I am reminded of it countless times-- by an ache, a sharp pain, a stiffness, a felt need to stretch, a range of motion issue, a flare-up; by sitting, standing, walking, cooking, cleaning, raking, exercising or doing much of anything for too long; by, when thinking about activities, my first thought automatically being about how it will feel on my back; by feeling deterred from a lot of activities that would otherwise sound really great if I had a better back.

3

 I can’t think of a specific time where shame took over, though I imagine there have been many. I know that shame can arise for me when my thoughts make me question my level of responsibility for my pain. Examples: Do my stress and anxiety create the pain? Do I not do enough core exercises? Is my pain tolerance just really low (ie am I wimpy)? Would other people just suck it up and push through this level of pain? Am I just being dramatic?

There’s also shame, embarrassment, and maybe loneliness around the idea that most people in my age range don’t deal with chronic pain and therefore wouldn’t understand it. I’m a person who is otherwise very healthy; I’m generally fit and active, so it sort of feels like my chronic pain doesn’t fit with how people see me, and that makes it hard to acknowledge. And then it feels like a secret. Of course I’m glad to look and to be generally very healthy, but I wonder if people would hear about my pain and think, “She doesn’t look like she has chronic pain. It can’t be that bad.”

On the flip side, I recognize that I can feel embarrassed or ashamed if a friend who knows about my pain comments that I look physically uncomfortable sometimes. Of course they mean this with love and care, but it can feel to me like my efforts to cover it up aren’t working.