My Personal Journey with Chronic Pain

Living with chronic pain also involves a lot of grief. Many of us are grieving the loss of our lives as they once were—grieving the loss of freedom, of a body that once felt familiar, and of the control we used to have over it. I was grieving too.

I want to share my journey with chronic pain. My hope is that my story will provide some insight into the inner lives of those who carry pain in their bodies every day.

I have spent years managing and suffering through a debilitating chronic pain condition. What made it so debilitating were the intense pain episodes—or flare-ups, as they're called in the chronic pain community. I’ve been doing well since the surgery, but my journey is far from over, as is true for so many people living with chronic pain and illness; the journey is never really over.

Today, I want to take you back to my life before I was fortunate enough to have the surgery. Back then, so much of my time and emotional energy was spent anticipating the next flare-up and preparing to manage it whenever it might occur. I remember trying so hard to plan and predict—when would it happen next? How bad would it be? Where would I be when it hit? I had to make constant adjustments and accommodations in my life, and it was all invisible work—nobody saw it. On the outside, I seemed like a well-adjusted, ordinary person. I have always been a very high-functioning and organized individual, but the years of managing it all alone were stretching me to my limits.

Along with the pain episodes came debilitating anxiety and overwhelming sadness. The anxiety whispered, How bad will it be next time? And the sadness asked, How many more years of this before I finally give up?

Pain can be very isolating. Even when we have family or partners who understand how bad it can get, nobody can ever truly grasp how it feels to live in a body that causes incessant pain. I could never step out of my body to find a moment of respite. Everywhere I went, I carried it with me—along with the fear of pain, and the anxiety and sadness that came with it.

What makes living with chronic pain even more isolating is the lack of necessary support from the healthcare system. As a patient, I went from one doctor to another, only to be told, in indirect ways, that the pain was all in my head or that there was nothing wrong with me. I often wonder if my pain would have been taken more seriously if I had been a man walking into the doctor’s office, saying I was in pain and needed help. It’s something I still think about quite often.

There is so much emotional labor involved in carrying pain in one’s body, but the most exhausting part of it all is the advocacy work required just to be noticed. Pain is invisible—it can’t be seen, only reported—and those who listen to these reports have immense power in how they interpret a person’s experience. When I reported my pain, it was often dismissed. Because pain is such a subjective experience, the person enduring it is the only one who knows what it feels like.

As a counselor, we’re trained to reflect on our own subjective experiences in situations similar to our clients' and respond from that place of empathy. It’s different when a client reports their pain. If a client says their pain is an 8 out of 10, that number isn’t equivalent to what my 8 out of 10 might be, or what I imagine 8 would be. A pain score of 8 is simply that—8—and it exists independently of any other standard or comparison.

Returning to my own story, my pain wasn’t just invisible to my doctors—it was also invisible to me. I could only feel it. And when a doctor dismissed it so easily, I started questioning myself: Is it really as bad as I think? Am I exaggerating? I remember one flare-up that left me semi-conscious on the floor. I don’t know how long I was out, but my head hurt for a month afterward from the fall. Still, that voice of self-doubt crept in: Is it really that bad?

Living with chronic pain also involves a lot of grief. Many of us are grieving the loss of our lives as they once were—grieving the loss of freedom, of a body that once felt familiar, and of the control we used to have over it. I was grieving too.

I worked incredibly hard to get to where I am now. I researched, I studied, and I advocated for myself. But I also want to acknowledge the privilege that helped me reach this point. I was able to do the things I did because I speak English, I have good executive functioning skills, and I had the space and time in my life to dedicate myself to learning about my illness. I also have a wonderful husband who selflessly paid for my treatment. Whatever privilege I had, it helped me get the resources I needed.

When I look back on my journey with pain, the image that comes to mind is of a lake. The lake is my pain—when I was in it, I swam for as long as I could, and I almost drowned. But because of my privileges, I was eventually pulled to the shore. Now, I no longer live in the lake, but I live right next to it. I fear I might slip and fall back in. I fear drowning again. This is how it is with pain—even when it’s gone, it’s never really gone.