Are you experiencing ups and downs as part of living with chronic illness? Do you go through periods when your symptoms increase or decrease? Or periods when you feel worse about your situation and struggle to manage difficult symptoms or emotions? Do you feel helpless or overwhelmed by flare-ups of symptoms that occur at the same time?
Flare-ups – which are also often referred to as exacerbations, “episodes,” increases, relapses or aggravations – can be triggered by life events, situations and even by thoughts or feelings. Triggers can be so subtle that you doubt the connection to the symptoms you are experiencing. They can be so minor that you fear that you are not managing your symptoms properly or that you are failing at this impossible task of living with chronic illness.
Triggers and their effects are not all in your head – they are in your nervous system.
The links between triggers and flares are real. These links hold powerful clues that can help you understand, treat and reduce recurring symptoms. When you have these tools to manage and cope with your chronic illness you can also see that you are not to blame for these challenges in your everyday life.
Flare-Ups in Chronic Illness Can Leave You Feeling Helpless And Overwhelmed
Flare-ups are a challenge. Their unpredictability and intensity can be scary, discouraging and deeply frustrating. Spikes in symptoms can leave you feeling helpless as they can occur even when you are doing everything right. You may feel increased stress or worry when you can’t tell if you are experiencing a temporary setback, a progression of your chronic illness, or something serious that you need to act on right away.
Symptom flare-ups in chronic illness are stressful because they don’t always respond to adjustments in treatment, changes in medications or dosage, or to stress reduction techniques and life style changes.
As a doctor I, too, was frustrated because I could do so little to help my patients cope with increases in symptoms or symptoms that were severe. As a person living with a chronic illness I’ve often felt I was failing when I’ve experienced symptom flares that seemed to come out of the blue, that didn’t respond to my usual strategies such as rest, or that took away my hard-won gains.
I’ve learned through scientific research in the field of trauma that it is possible to understand some of the causes of symptom flare-ups. With the perspectives that come from this field of knowledge you can develop powerful new tools to begin to predict some of your own flares. These tools can also help you decrease and even prevent some of these difficult episodes.
Triggers Are Often Linked To Trauma
Triggers are reminders of past experiences that have been so intense or overwhelming that even subtle links to them can stimulate symptoms months, years or even decades later. Triggers are a well-known characteristic of trauma. But, because triggers typically occur outside of our awareness, it’s common to miss the connection between reminders of difficult past events and the worsening of a symptom.
When I learned about the concept of triggers in my training as a trauma therapist I wondered if they played a role in chronic illness as they do with states of emotional or psychological distress. I became particularly curious about whether they affected flare-ups and other symptoms of chronic illnesses of all kinds. I started to explore whether triggers affected any of my own symptoms with my chronic disease. It took me over a year of actively looking before I saw the first link between an exacerbation of my fatigue and a trigger. The trigger was a momentary conflict I experienced during a phone conversation. The feeling of stress had been so slight and brief – the kind of thing that can happen multiple times a day in regular life – that I had paid it no mind. It wasn’t until my energy dropped a few minutes after getting off the phone that I realized I had been triggered into a flare.
The connection between trauma, triggers and exacerbations provides a world of new coping and treatment options for those of us living with chronic illness.
Why Do I Have Flare-Ups?
The triggers and flares that you experience are unique to you. The specific patterns, types and intensity of symptoms you have during a period of worsening are usually slightly different from anyone else’s, even when you have the same condition. And while some things are stressful to most of us – such as surviving an accident, losing a job or simply running behind schedule – most triggers are personal to you and your past experiences.
Triggers can be stressors – such as the subtle phone conflict that triggered my fatigue. But they can also be seemingly ordinary sights and sounds like the smell of a campfire, which is neutral or pleasurable for most people but can be a reminder of traumatic events such as the loss of your home in a fire. The sight of blue sky is another common event that is pleasurable for most of us but a trigger for others, such as if you’ve had an accident on a cloudless day. Both of these typically neutral or comforting experiences can be triggers if you were at or near Ground Zero on 9/11 or were otherwise traumatized by such an event.
When you learn about your triggers you can more effectively apply the skills and expertise you have already developed while living with chronic illness. You can see how to harness the clues from your flare-ups and use them to decrease the frequency, intensity and duration of your symptom intensifications.
Why Am I So Stressed And Afraid?
If you feel overwhelmed or immobilized when you can’t predict or prevent symptom flares despite everything you have learned about living day in and day out with your chronic disease, you are not alone.
Painful or distressing symptoms and flare-ups can leave you worried, angry or hopeless and these kinds of feelings are a normal response to triggers you experience. Reminders of unresolved trauma stimulate nervous system responses of fight (anger, irritability and frustration), flight (anxiety, fear, stress) and freeze (feeling numb, wanting to withdraw, losing motivation to do anything).
Treating trauma is a way of decreasing your feelings of overwhelm and isolation. As a result, trauma treatment can also be an empowering process that gives you more strength and self-compassion as you continue this unplanned journey of living with chronic illness.
Flare-Ups Are Not Your Fault
Even if you know at some level that flare-ups are not your fault, it is common to feel shame and concern that you are somehow to blame for your symptoms. But the truth is that feelings of self-judgment and self-blame are a reflection of trauma and not a sign of some internal weakness or moral failure.
If trauma is contributing to your flare-ups in your chronic illness symptoms it does not mean that your condition or symptoms are psychological. And it certainly does not mean that you are to blame for having a chronic illness. Nor for experiencing aggravations or periods of intensified symptoms.
The science behind how we experience, process and recover from trauma provides a context for understanding and explaining your symptoms and the ups and downs in your life with chronic illness. You can see and accept that you are not the cause of your condition or your flares. And, with these new resources, you can recognize that your body is actually working hard in the face of very challenging circumstances that no one else can see or feel.
Medical Treatment Can Be Traumatic When Living With Chronic Illness
Living with a debilitating, inescapable and potentially life-threatening physical illness can be a traumatic experience. As can living in a body that is unreliable, that experiences painful and debilitating symptoms, or that keeps letting you down. Receiving a diagnosis – or being blamed, shamed and disbelieved when trying to get a diagnosis in the first place – can also be traumatizing.
Medical personnel rarely understand the amount of raw courage, dogged perseverance, intelligence, expertise and sheer stick-to-itness that you as a person living with chronic illness have to find and nurture and manifest as a part of your every day life.
If you have a chronic illness and you dread or put off appointments, have nightmares about procedures, or feel on guard when you are in medical settings you may have experienced medical trauma. You may be having a trauma reaction if you experience anxiety, changes in blood pressure and heart rate – or have other symptoms and flare-ups – with white coats, shiny linoleum hallways or the smell of antiseptics.
These kinds of stressful and uncomfortable experiences represent common triggers for people living with chronic illness. Feeling anxiety, worry or fear surrounding such experiences is a normal reaction to trauma.
There are many ways of working with trauma and they include finding support and connection with others who can be there for you during difficult times. Whether this is through friends and family, compassionate trauma informed health care providers, or trauma therapy – addressing trauma can make it easier to take charge of your life even as you are living with chronic illness.
When You Have No Apparent History Of Trauma
Traumatic events are often much more subtle than surviving war, famine or abuse. As a result, most trauma – and its effects – remain unrecognized in our medical system and in our culture.
If you have a chronic illness and experience flares, chances are that you have experienced trauma without having recognized it. Getting curious about aggravations in your symptoms and learning how to recognize and identify triggers makes a difference and will give you more control in living with chronic illness.
Is My Chronic Physical Illness Psychosomatic?
This is a common concern but no, your chronic physical illness is not psychosomatic. The term “psychosomatic” reflects a gap in medical education about the clear, strong and substantial scientific evidence explaining what trauma is and how it can have long-lasting effects on your body, on your biology and on the way your nervous system develops and operates.
The term has been used to subtly blame people with chronic illness for being influenced by thoughts, feelings or life events and to imply that their life-changing physical symptoms and chronic physical diseases are “not real” or “just in their heads.”
New Tools for Living with Chronic Illness
Understanding how life experiences influence our nervous systems and how they learn to perceive threat offers powerful new tools for minimizing, preventing and working with flares. These tools are also a huge help for living with chronic illness. You can learn more in my free ebook, “The Chronic Illness and Trauma Connection.”