For many of us, the entire chronic pain experience exists within the context of great loss. The challenges of living in pain can slowly creep in and take over every aspect of our lives, forcing us to give up on everything that feels essential to who we are, from our hobbies and careers to our dreams and identities. Mourning the loss of all of these things is not only devastating in and of itself, but it also leaves a terrifying vacuum: who am I without the things that make me who I am?
A disappearing self
Going through life with debilitating pain (or the fear of triggering it) can make us feel like our body is a prison holding us back from living life, as opposed to a vessel that enables us to engage with the world. While dreams of bungee jumping or becoming a professional athlete may have been shelved long ago, pain also makes it difficult to do many things that may not appear outwardly connected to someone on the outside.
For example, while most people have the luxury of choosing a career path based on their interests, passions, and personal goals, physical pain can be so all encompassing that we have to consider whether or not our bodies can live up to the physical requirements of our dream jobs. Can my back handle sitting at a desk all day long? Do my energy levels allow me to work night shifts? Does my medication bring with it prohibitive side effects? Does my treatment plan require a flexible schedule? Do unexpected flare ups make it difficult to commit to anything long term? In some cases, we know in advance what we are getting ourselves into. In many, it is a reality that comes crashing down on us as our energy, pain, or side effects shift, forcing us to make life changes we do not want to be making. In a society where our career choices have such an impact on our sense of self, social status, and day to day life, it is natural to feel resentful of our bodies for holding us back from fulfilling our dreams
Moreover, there is perhaps nothing that has a greater impact on our identity, lifestyle, and emotional wellbeing than human relationships. But, forming intimate relationships and building a family can be extremely complicated when we face what feels like a lifetime of pain. How will I find or maintain a partnership that feels mutually supportive and safe? Am I loveable and desirable? Will I be a burden on my partner? Am I physically capable of having children? If so, will I be able to be the kind of parent I dream of being? Again, sometimes we may find ourselves already within a relationship when things change, and we are forced to mourn what was or the fantasies that will never be. As social beings that generally view ourselves within the context of family groups, being unable to create the family structure we want deep down can be devastating.
In addition to work and family, there are all those little things that make us who we are. Our love for swimming, dreams of traveling, or the thrill we get from building something new with our bare hands. Whatever our hobbies and interests may be, they are so much more than things we do to pass the time; they are the wells of vitality that fill our souls as well as the rivers of creativity that flow outward, expressing our innermost being to the world in a unique way. Being forced to sacrifice these things because the cost is too high, they do not fit into our daily demands of work, rest, and treatments, or simply because they are too physically demanding, can leave us feeling empty, dry, and disconnected from our true selves.
The uncertainty of pain
Whether our chronic pain has been with us since childhood or was triggered later in life, it is a strange and inconsistent beast that can creep up on us when we least expect it. Even if we are not suffering from physical pain in a specific moment, we may be used to making decisions based on the uncertainty of the shifting pain and related flare-fear and anxiety.
Living in a state of constant uncertainty can be absolutely exhausting and paralyzing. My current job may be physically difficult, but who says I will ever find anything better? My current relationship may have its issues, but how do I know this isn’t the best I’ll find? My current pain levels may be miserable, but what if trying something different just makes things worse? No matter how difficult a situation is, it is terrifying to walk away from a familiar reality into an unknown that could end up being far worse. The worst case scenario threatens us from within the darkest part of our imagination. How will I get up again? Will I get up again?
Believing things can be better
While facing all of this loss head on is terrifying and devastating, we owe it to ourselves to acknowledge the aspects of our lives that have been stolen by our pain. Mourning our reality – the things we love that we’ve been forced to give up on, the aspects of our identity that have been taken from us without our consent, the dreams and fantasies for our lives that will never come to fruition – is a deep and painful process. However, once the tears stop and the heaviness lifts, it is one that may create space for us to move forward in life with a greater perspective on what awaits us.
While fear and uncertainty often lead to a state of paralysis, there is also something hopeful in uncertainty, if we dare to allow ourselves to see it. If the uncertainty of the pain experience has taught us anything, it’s that we never know what’s waiting for us around the corner. While we are used to preparing for the worst, what if we allowed ourselves to imagine a future that is slightly better than our past or present? To accept that there is movement and energy in the world that has the power to shift things in a way that tomorrow can be completely unrecognizable from today – for the better!
When we dare to make a change, we are not necessarily stepping into a rabbit hole where the only way is down. We are creating space for a shift. We are taking a step in a new direction. Who knows what awaits us? Of course, there is always risk involved, and no one can promise that tomorrow will be better than today. But after watching ourselves slip away to the point that we are unrecognizable to ourselves, isn’t it worth trying something new? When we have been forced to give up on so much, what do we have left to lose?