One of the scariest and most stressful experiences of living with chronic illness happens when treatments fail to work. When they make us worse. Or when they can’t prevent our symptoms from progressing over time.
Certainly, it’s partly the nature of having a chronic illness, but when treatments that are helpful for some people cause problems for us it can be discouraging or make us feel like we are doing something wrong. Or worse, that there is something wrong with us.
If these experiences sound familiar, you are not alone. And it’s not your fault.
The ins and outs and complexities of disease treatment do not arise because we are “difficult.” There is a context for explaining these types of challenges to treatment and it comes from our understanding of the science of trauma. Trauma perspectives offer valuable tools to help us live our chronic illness lives more fully and with more ease, no matter who we are or what our illness is.
As a doctor
When I was a physician, patients and I were often frustrated when their symptoms persisted – or worsened – despite proactive aggressive treatment. We were confused when symptoms needed ever-increasing doses to remain under control. At times we quickly and successfully treated one symptom – only to have a new one emerge. Patients felt understandably discouraged and often overwhelmed.
I left medicine in part because our approaches to disease treatment – and our tools – were inconsistent, unreliable, often lost effectiveness, and frequently made symptoms worse. They also focused on mitigating symptoms without understanding the actual causes of chronic illnesses.
As a psychotherapist
When I retrained as a psychotherapist I started to see patterns that made sense of what I had been baffled by as a doctor.
Although symptoms are often worsened by stress, fear, and grief these emotional and psychological factors are not the cause.
Patterns of sensitivity to life events are characteristics common to trauma. They are clues that explain why symptoms can be so complex, variable and unique in different people even when they have the same disease.
Symptoms are not chaotic or random. Sometimes physical symptoms “need” to be there; represent an underlying intelligence that actually has our best interests at heart; need attention and curiosity rather than to be fixed or eradicated. The same is true for feelings such as anxiety about a pending event or the onset of profound grief following a seemingly minor loss.
There are links between chronic illness and the subtle and unrecognized traumatic events that most people think are just a normal part of their everyday lives, their childhoods and their family histories. These links show the importance of trauma in the development of chronic physical illness of all kinds – from type 1 diabetes, asthma, inflammatory bowel disease and rheumatoid arthritis; to lupus, Parkinson’s and multiple sclerosis; to schizophrenia and autism; to chronic fatigue, fibromyalgia, and more.
As a person with chronic illness
Early in my change of careers I developed a chronic illness. The perpetual inability to fix my debilitating fatigue made me feel like a failure. I experienced how my symptoms often felt outside of my control. Sometimes I felt broken. Bereft.
Stress, fear and exhaustion are a natural part of being so sick, and they also make everything harder. Repeatedly experiencing side effects, symptom exacerbations and intolerance to the most highly appropriate and selective approaches to disease treatment for my own illness made me cautious about trying new things. Health care providers varied greatly in their ability to validate and take me seriously, respect my treatment path, and trust that I was working hard to get better.
When I began to look for possible trauma in my history I was surprised (and still am) by how subtle the events were and how hard it could be to recognize the links to my symptoms and exacerbations. But it all gradually began to help me make sense of my symptoms: the profound and debilitating fatigue, the feelings of despair and defeat and self-blame, the progression of some symptoms even as others improved, the development of new symptoms despite healing from trauma, and the alternating periods of ups and downs in my symptoms.
What I’ve learned
People with even the most debilitating symptoms are intensely motivated. We are committed to healing despite the ongoing disappointments and struggles and side-effects. We are fiercely determined. Courageous in the face of the intimidating and distressing lack of control that comes with living with an incurable and sometimes life-threatening chronic illness.
The scientific field of trauma, which we do not learn about in medical school, provides life-altering insights into patterns, symptoms and disease treatment:
- The effects of trauma are not only underestimated but also misunderstood.
- Trauma can cause complex physical, physiological and biological illness and symptoms. Or it can trigger the onset of chronic illness and make your symptoms more sensitive to stress.
- Psychological issues are not the cause of your physical and biological symptoms or chronic illness.
- Trauma has characteristics quite different from those associated with chronic stress.
- You can recover and heal from trauma.
- Trauma therapy may help you reduce your physical symptoms and symptoms of chronic illness.
- At the least, treating trauma can decrease your sensitivity to stress and help you cope more effectively with the unrecognized trauma of living with a chronic illness and undergoing medical treatment, which can be traumatizing in and of itself.
If you’ve experienced unexpected side effects, worsening from treatment, a lack of response to appropriate treatment, a need for increasing doses, or a sense of increasing caution, risk aversion and failure with treatments of all kinds – you may be experiencing the effects of unresolved trauma.
But trauma is psychological isn’t it?
While it is still common to be blamed for our very real symptoms when we have a history of trauma or chronic stress, the perspective that all effects of trauma are psychological is out of date.
Although health care professionals who treat trauma are usually psychotherapists or psychologists, this does not mean that our illness or symptoms are psychological. It just reflects the limitations we still have in our medical culture and in our approaches to disease treatment.
Approaches for treating trauma actually work with our nervous systems, our brains and our physiology. They facilitate change by supporting the inherent plasticity of our brains. If trauma has triggered the onset of your illness or has played an important role in the development of your chronic illness it does not mean that you are sick because of negative thinking. It does not mean that it is “all in your head.”
Trauma and most of its effects are not yet recognized in medical care and disease treatment. There is a lack of awareness about how traumatizing it can be to live day in and day out with an incurable or life-threatening illness. There is also a common failure to understand how needing to seek emergency and acute care, undergo routine medical treatments and invasive procedures, and keep looking for help from medical professionals who can be judgmental and dismissive can also be a source of trauma.
If your symptoms aren’t responding well to treatment and you’ve been shamed, perceived as though you were just “wanting attention,” or told you were unmotivated, know that nothing could be further from the truth. Neither trauma, nor your symptoms, are your fault. Hang in there. The trauma perspective is empowering. It provides a broad context for understanding and working with your symptoms. And you can heal and recover from the short and long-term effects of trauma.
When you feel resistant to trauma as an approach to disease treatment
If you feel hesitant about or resistant to the idea of working with trauma, as I still often do, don’t worry. Wanting to avoid feelings from experiences that have been overwhelming, unbearable or inescapable is completely natural. In my own personal work I tend to go through cycles of actively working with an issue or symptom and then taking a break from trauma therapy, which allows time for recovery, rest, as well as integration.
Working with trauma is very different from re-living it.
Trauma treatment is about repair and a new kind of experience – one with a skillful, informed, highly attuned, compassionate ally. It’s about discovering safety and trust, which may be a new experience for you. Sometimes your motivators to start therapy will be your difficult-to-treat or tolerate symptoms. Ultimately, you get to choose when you feel ready or “ready enough.” Trauma therapy is about going at your pace, learning to trust your impulses, and working with your timing.
When trauma therapy makes things worse
Chronic illness is complex. When working to resolve trauma in chronic disease it is important to work gently, slowly and in small chunks.
If you experience worsening of symptoms, feelings of disconnection, the repeated reliving of old traumas, or a lack of safety and trust in your therapist it is an indication that your treatment needs to change or slow down. It means you need to talk to your therapist. If you can’t discuss it with your therapist, if he or she doesn’t “get it,” or if nothing changes find a different trauma therapist or change to a different modality.
Just as there are many specialties in medicine, there are also many ways of working with trauma. It takes time and effort to find a medical doctor who is skillful and knowledgeable about your specific chronic disease, and it is a similar process when looking for a therapist.
Give yourself permission to take the time that you need. Find an approach to treating trauma that feels right for you. Allow yourself to look for a person and a modality that are a good fit for who you are and what you like and what you need.
Is trauma treatment a potential cure for chronic illness?
It appears to be.
Addressing and healing trauma is a new tool for chronic disease treatment. I see it as an exciting path with great potential.
The degree to which healing can take place – as well as the length of time it takes – needs to be explored. Treating trauma is clearly not a quick fix for chronic illness, as my own journey attests to.
But the links – and the possibilities – are there.
If trauma has been a factor in the development of your chronic illness
it is but a small step to wonder how far the treatment of trauma can go
in support of your healing – in whatever form and to whatever degree –
from chronic disease.
I share and explore the research and personal experience about my process of working with my own chronic illness from trauma perspectives on this blog.
Join in the exploration.
Share your insights.
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What are your experiences? The “failures” and successes you’ve had? Leave a comment below.