Chronic pain is uncertain by its very nature, reacting erratically to treatments, differing in cause and severity between patients, and waxing and waning like the moon, but without its celestial schedule. Yet even when it’s central to the challenge of living with a chronic condition, uncertainty is not something many patients get used to. Living and coping with chronic pain and uncertainty is incredibly difficult.
Chronic pain is defined by a lasting and inescapable pain that lingers for at least twelve weeks. Because pain is subjective in nature and difficult to locate or diagnose, many patients with chronic pain also struggle with illness uncertainty. Illness uncertainty is described as a “sense of loss of control, and a perception about one’s illness that changes over time,” as well as “the inability to determine the meaning of illness-related events.”
While patients may be confused about the nature of their diagnosis in many different cases, chronic pain conditions fulfill the criteria for illness uncertainty disproportionately often, especially with fibromyalgia. Learning to cope with both the pain and the uncertainty around its treatment are all part of a complex journey towards living a better life while diagnosed with a chronic pain condition.
Uncertainty takes many forms while struggling with chronic pain. People living and coping with chronic pain are uncertain about making plans – any plans they might have, particularly social ones, may be dashed by a sudden and unexpected episode.
They’ll have to develop an intuition for when they certainly can’t go to an engagement, and when they might be able to, but with the option of still being able to cancel at the last minute. This can make it difficult to develop and foster relationships with friends as well as potential partners, as their uncertainty bleeds over into the lives of those around them.
They might also not be certain when they need or don’t need help. Just as how someone living with chronic pain doesn’t want to let others down but also doesn’t want to live in total isolation, they want to be able to rely on themselves and function as a normal human being, but know that there are days when they cannot do so without help.
Finally, another example of uncertainty is the uncertainty of the long-term future. While short-term plans and weekend meetups might have to be canceled on a whim, another consequence of uncertain pain is that one cannot know what the future holds, in any sense. The condition might get worse, or it might get better.
Treatments that have worked for months might suddenly stop working, or the side effects become too difficult to justify continuing treatment. No plans can be made past a certain point because life becomes too much of a blurry mess. Balancing these things on the whims of a body they cannot control can be incredibly frustrating and remains part of the reason why chronic pain is often co-occurring with symptoms of poor mental health related to high stress, constant anxiety, and low self-esteem.
When it comes to coping with chronic pain in the face of uncertainty, we must:
It would be condescending to tell someone in constant pain that the uncertain nature of their life is something they just “have to accept.” Doing so takes time, practice, and a careful consideration for what you can and cannot accept.
It’s alright to be upset with your condition and the way it affects your life. But it’s also important to understand how your own perception greatly affects the impact that uncertainty has on your mood and condition – especially given that mood itself can have a profound effect on the severity of chronic pain.
By learning to find ways to cling to what is reliable and accept what isn’t, you can begin to expand what you are comfortable with, and learn to be less upset by sudden and unexpected changes, particularly ones related to symptom severity and planning. Identify things around you that you can control.
Utilize the uncertainty to see each day in a new light and face it with the expectation that you’ll be challenged and given an opportunity to feel fulfilled by how you’ve stepped up to that challenge.
Finding ways to do things on your own is important when you’re struggling with chronic pain, but it’s also important to have a system of support around to make sure that, when you really need it, there are others around who can help you.
There is no shame in seeking help from your loved ones. Instead of feeling powerless, embrace the warm fact that there are people around you who care. As mentioned before, perspective is important, and one of the difficult facts about chronic pain is that there are certain things you cannot affect or change.
Instead of pushing them away or refusing to delegate, accept their help and give back in any way you feel you can. Trust those around you to do as you ask and need and work to stop feeling anxious about everything you cannot control or change.
It can be tremendously difficult to adhere to treatment and find ways to deal with stress, amid the complications and isolation forced upon us by the ongoing pandemic.
We can never truly know what tomorrow brings, and the feeling of uncertainty that permeates chronic pain is only amplified during a time like this. But we can still decide to affect the things that we can control and learn to accept the things we can’t.