Article, "Truths About About My Chronic Pain Journey"

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"There is one truth that is by far more unsettling than the rest, though. The truth is, there is an emotion far more painful for me than fear or dejection. That emotion is hope. Every time I try a new treatment, every time I have a really, really good day where my pain is a 4 or 5, every time I succeed in doing things like picking up my 2-year-old nephew, or I get through 24 whole hours with out sublaxing a hip, a little kernel of hope blooms. "

"For those of us chronically ill people, hope can be a disused emotion. Just like developing kinesiophobia after a serious injury, we might shy away from hope because it just hurt too much last time we did it, and we might not think we can take the pain and crushing disappointment again.
Here’s the critical bit, though. Hope is important. It is so important, there is an old Greek myth about it"

"Oftentimes hope hurts. Sometimes the pain of it slices at me like the jagged shards of my shattered expectations. Hope that remains empty, holding nothing but bits of ruined dreams of new treatments and permanent solutions, can cause us to be dejected, and miserable, hostile and lash out at the ones we love. Hope can cause us to have a thousand wounds and not spill a drop of blood."

Conversely, the remains of shattered hopes and unfulfilled expectations teach us true compassion. Hope, however painful it can be, drives us on. It drives us to better understand chronic conditions — including chronic conditions that don’t limit our ability to remain alive but can drastically affect the quality of our lives. Hope drives us to research and fundraise, to develop new potential treatments, and to educate people. Hope drives us to get out of bed in the morning, even though it can be exhausting and painful. It drives us to dream and to reach for the stars.

Yes. Hope can hurt, but if we keep it clutched tight enough, even when it hurts, maybe, just maybe, one day there will be a cure for us.

For now, I’ll just keep limping along, with splints on my joints, the pain firmly hidden behind the smile on my face, and hope in my heart.