Uncertainty: A journey from paralysis to courage

How can we live full lives when uncertainty shapes every aspect of the chronic pain experience?

If human beings have learned anything over the past two years, it is the staggering uncertainty hiding behind every moment of our lives. When the COVID-19 storm first raged through the world, we all got hit with the realization that we have no idea what’s coming our way, and that whatever it is has the power to completely overturn reality. Since then, uncertainty has become a familiar – albeit uncomfortable – face in our lives. When it comes to work and school schedules, travel plans and social engagements, or our emotional and physical health, we can no longer ignore the fact that life is subject to change at a moment’s notice.

For those of us living with chronic pain, uncertainty has always been around – even if we never gave it a name. Whether our pain appeared suddenly, developed as a result of a traumatic accident, or has been with us since birth, uncertainty is a powerful independent experience that shapes life with chronic pain. 

The Unreliability of the Chronic Pain Experience

Unpredictability is inherent in many aspects of the chronic pain experience. The type, sites, and severity of our pain may shift over time, or even from minute to minute. The causes and triggers are constantly evolving, and as our pain changes, so do our functional abilities. Treatments and medications that have been effective in the past can suddenly stop working or cause unexpected side effects that may be worse than the pain itself.

As such, oftentimes, without even realizing it, we may end up navigating our lives not around our actual pain, but rather around the uncertainty of the pain experience. We are constantly making decisions about rest, diet, movement, and scheduling in an attempt to prevent the onset or worsening of pain, despite the fact that the impact of our choices is often impossible to predict. It’s like rolling a dice, but you don’t even know if you’d rather it land on a one or a six. 

The Emotional Impact of Uncertainty

No matter how hard we try to protect ourselves from pain, we are often reminded that we are simply not in control. As brief sparks of relief disappear into the darkness of pain without warning, it may feel like we are on a rollercoaster ride of hope and disappointment, completely powerless against whatever is waiting for us around the bend. 

Even if we eat right, exercise appropriately, take our medications, go to our treatments, and follow all of the doctors’ orders, we can still end up bed-ridden. This can cause tremendous frustration and despair, coupled with shame and guilt, as we ask ourselves: “Did I push myself too hard?” “How could I have been so stupid?” “What did I do wrong this time?”

Frozen in the Face of the Unknown

A lifetime of unexpected twists and turns can leave us feeling like the next move we make can either make or break our life. The problem is, we have no idea which it will be, and what we can do to ensure the former. This type of pressure can cause paralyzing anxiety. When we don’t know which path to take, we find ourselves frozen at the fork in the road. 

In an effort to regain some semblance of control, we may opt to avoid activities, relationships, and plans. While there is a chance that they will be fun and positive, there is also a chance that they will cause irreversible physical or emotional damage. The certainty of protecting ourselves may seem safer than the fear of the unknown; the disappointment of cancelling plans at the last minute, the heartbreak of another failed treatment, and, of course, the physical pain of a seemingly avoidable injury or flare up. Sure, we may miss out on potentially enriching experiences, but at least we’re in control. 

Accepting Uncertainty as a Way Forward

As we spoke about in this article, Radical Acceptance is an invaluable tool for those of us living with chronic pain. Instead of trying to resist or outsmart uncertainty, it helps to acknowledge that it is intertwined within every aspect of the chronic pain experience. Instead of using uncertainty as an excuse to do nothing, what would it be like to factor uncertainty into our life plans and prepare accordingly?

Yes, going to this concert may take a toll on your body, but if you pay extra for a comfortable seat, go with a supportive friend, bring painkillers, and book a massage in advance for the following day, perhaps the experience – and even the pain – will be worth the risk. 

Life with chronic pain requires a constant cost-benefit analysis of which calculated risks are worth taking in order to engage in a meaningful, enjoyable life. We want to live full lives. We deserve to live full lives. When living with the uncertainty of chronic pain, all we can do is make the best choice possible based on the limited information available, knowing that it may cause pain anyway. We’ll never know unless we try, and trying is how we discover ourselves and determine our limits and priorities. 

As Brene Brown writes in The Call to Courage:

“True courage comes when we decide to take a risk without knowing the outcome. It means showing up, despite the risk. When you show up in this way, you open yourself up to joy and connection, but you can only do it by accepting that there could be pain.”

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