It’s Not Just the Pain: Living With Uncertainty

It has been a while since I have posted. I wanted to reflect a bit on my experiences during this time, and how common these experiences are for people living with pain.

Everyone gets sick sometimes. Sometimes we have waves of nausea. Sometimes we are overwhelmed with fatigue. And, many times, the primary complaint is pain. Pain in our abdomen. Pain in our head. Pain in our skin, pain deep in our bones—pain is the alarm signal our bodies have to tell us, “Something is wrong!”

I’m a health psychologist. When I have unexplained pain, it is of course awful, but it also deepens my understanding of how illness impacts mood and behavior. It also lays bare how hopping on the healthcare carousel can worsen mood and ironically make living with symptoms harder.

Misdiagnosis

Misdiagnosis is the most common medical error. We often express misdiagnosis in terms of average years from symptom onset to accurate diagnosis: 6.4 years for fibromyalgia, 5.7 years for cluster headache; in one study, 53 percent of people with migraine had to wait more than 5 years after symptoms started before receiving an accurate diagnosis. This framing focuses our attention on the years lived in uncertainty.

Pain with no rationale.

Pain with no appropriate treatment.

Years spent wondering, “Am I just doing this wrong?”

And, “Is this just my life now?”

Uncertainty

For me, the most challenging part of my recent pain journey was the uncertainty. For the past few years, I have lived with pain for which I didn’t know the cause. For the past year, that pain prevented me from doing the things I normally did: travel, go to work, and even write. The causes of my own pain were uncertain until I was actively undergoing surgery when, thankfully, it became both glaringly obvious and fixable. And it was only in the past few months, when I finally knew what had been causing my pain, that I fully understood how difficult it had been to manage this uncertainty.

What is going on? Is it serious? Am I “just” in pain, or am I in danger?

Will I be able to travel for conferences again? Will I be able to teach in person? Or am I always going to be unreliable, making plans and then canceling?

Am I just broken?

The late Merle Mishel has given us a framework for thinking about these issues called the “Uncertainty in Illness Theory.” it helps us understand that how we cope with uncertainty in our health matters. In her earlier work, she suggested that when uncertainty about medical symptoms is appraised as a danger, we cope with them by mobilizing resources and trying to control symptoms; on the other hand, when medical symptoms are conceptualized as an opportunity, we use building strategies to improve our lifestyle and overall health.

More recent work shows that uncertainty has a different role in chronic illness, where symptoms are expected to continue for a lengthy period of time, than in acute illness, where symptoms are expected to resolve with treatment. From where I sit, having just received an acute explanation for years of pain that I (and my providers) were concerned was chronic, it is not so easy to know whether you are living with an acute or chronic illness. From my lived experience, I believe this is a major driver of uncertainty for people living with unexplained pain: Is this pain caused by something acutely wrong with me for which I should proactively seek care? Or is this pain chronic neurological misfiring that I need to learn to cope with?

Coping With Uncertainty

1. Do not despair. Do not disengage from your relationships (friends, family) or from the medical establishment (physicians, nurses, psychologists).

Instead: Hope. Keep trying to find a diagnosis and effective treatment plan. It is true that pain is a universal experience, that many people experience chronic pain and find ways to function in daily life, and that you can, too. It is also true that pain should be explained and treated. You deserve pain relief.

2. Do not believe your symptoms are your fault. During my recent pain journey, I often hesitated to reach out to my physicians with the same symptoms that I was told were “impossible.” I wondered, “Am I somehow manifesting these symptoms? Is this all in my head?”

Instead: Live your life. Spend time identifying the things you really value and make space for them. Persevere on your pain journey, stay engaged, but don’t forget that you are more than your pain.