What You Should Know About Chronic Illness-Induced PTSD

You probably already know trauma comes in a variety of forms. And what causes lasting post-traumatic stress disorder (PTSD) symptoms for one person may be different from everybody else. That doesn’t mean, however, your experience isn’t real or valid. The same goes for PTSD that’s the direct result of living with a chronic illness — illness-induced PTSD. Mighty contributor and former family doctor Veronique Mead explained it this way:

• What is PTSD?

The act of scheduling a medical appointment, going to a hospital, or having a procedure often triggers flare-ups or set backs for people with chronic illness. We may develop brain fog, feel shaky or have trouble sleeping before or after such events. Sometimes we avoid doctor visits altogether, despite the possibility our symptoms may get worse. We can also have flares even if we’ve gone to help a family member rather than for ourselves. These kinds of behaviors and bodily responses are evidence of more than simple stress. They are normal indications of unresolved trauma.

What Is Illness-Induced PTSD? (and Who Gets It)

“Illness-induced PTSD is defined by clinically significant post-traumatic stress symptoms … which results from an acute or chronic illness,” Renée El-Gabalawy, Ph.D., psychologist, assistant professor and Health, Anxiety and Trauma Lab director at the University of Manitoba, told The Mighty.

Illness-induced PTSD can be the result of any chronic illness, though it’s been best studied in conditions like heart issues, stroke and cancer. It’s estimated approximately 12-25% of those who survive a perceived life-threatening medical event will develop PTSD. In a study of patients with Crohn’s, 19% screened positive for a PTSD diagnosis. In comparison, approximately 30% of sexual violence survivors develop PTSD and 11-20% of military veterans have PTSD.

It’s not just living with scary symptoms that can lead to illness-induced PTSD. Encounters with the medical system, from invalidating doctors to invasive tests, surgeries and other procedures can be traumatizing. Other ways your life changes after a diagnosis, like the financial toll of paying for treatment, job loss and navigating your relationships when others don’t understand what you’re going through, can have a big impact too. In the professional community, however, illness-induced PTSD isn’t as well understood.

“Illness-induced PTSD is not currently well recognized; however, a recent growing body of literature on the topic has increased this limited awareness,” El-Gabalawy said, adding:

In some of our research we have found that PTSD symptoms are less severe in illness-induced PTSD compared to traditional PTSD; however, we believe that this relates to the fact that current assessments for PTSD do not accurately capture the nature of illness-induced PTSD thus underestimating symptom severity.

How Is Illness-Induced PTSD Different?

Symptoms of medically-induced PTSD or illness-induced PTSD, like flashbacks, intrusive memories, agitation, being hyper-aware of your surroundings, difficulty sleeping or changes in your mood, are similar to the PTSD symptoms that can result from other types of trauma such as military experience or sexual assault. But illness-induced PTSD is also different.

“The growing body of literature that is emerging on illness-induced PTSD … is that there are distinctions with illness-induced PTSD compared to more traditional conceptualizations of PTSD,” El-Gabalawy said. “It is essential to understand these differences to develop appropriate assessments to identify suffering individuals and advance targeted treatments.”

Here are four key ways illness-induced PTSD is different:

1. Chronic Illness Doesn’t Have a Fixed Endpoint

“The first major difference is that illness-induced PTSD often involves an ongoing and internal threat (e.g., in the context of chronic illness), rather than an external and time-limited event (e.g., a single assault),” El-Gabalawy said. Whether it’s daily symptoms, walking on eggshells between flare-ups or wondering how long remission will last, you may face trauma triggers and reminders every day.

Researcher Donald Edmondson, Ph.D., used the term enduring somatic threat (EST) to describe how PTSD is unique for those with a chronic illness. Without a definite endpoint, chronic illness remains a major part of your current reality. As El-Gabalawy pointed out, you also can’t easily escape or avoid your illness, especially when treatments and follow-up medical appointments and procedures are necessary.

2. Illnesses Are Internal, Not External

Often we think of trauma as something that happens outside of you, like abuse or combat. Medical trauma can be caused by external sources, including surgery or interactions with medical professionals. An illness, however, is something that’s part of or inside your body. Unlike other forms of PTSD where you can walk away from your triggers, that’s not possible with chronic illness. This difference matters for a few reasons.

As Dr. Edmondson wrote, with a serious illness, “consequences may last for years and place an ongoing threat squarely in the body of the survivor.” It’s very different to treat and manage trauma you carry with you. Your PTSD symptoms may also be directly tied to your illness symptoms, making your physical and mental health nearly indistinguishable at times. El-Gabalawy used the example of “heightened anxiety related to bodily sensations such as pain,” which can be triggering and difficult to pin down.

3. You Need to Be On High Alert

Being hypervigilant, or always on high alert, is one of the classic signs of PTSD. In traditional PTSD therapy, you might learn the traumatic events are now over and in the past so your revved-up alertness is no longer needed or helpful. Chronic illness is different. Hypervigilance can be critical.

Your doctor may ask you to watch carefully for specific symptoms or changes in your health. You must follow a medication or treatment plan carefully, and you’re often required to modify your daily activities based on your condition. These considerations are necessary for your physical health but they keep your nervous system locked in a heightened state of vigilance. Over time, this can lead to other PTSD symptoms like insomnia, fatigue or isolation, and even worsen your chronic illness symptoms.

4. You Worry About the Future, Too

Typically, intrusive PTSD memories and triggers are about events that happened in your past but are now over. When your chronic illness — and triggers — are ongoing, however, your “intrusive thoughts may be both past (e.g., relating to the onset of the illness) and future-oriented (e.g., related to the uncertainty of one’s health trajectory),” El-Gabalawy said. One study found that 81% of intrusive thoughts associated with illness-induced PTSD were related to fears about the progression of their condition.

“All of the trauma symptoms I experience have their root cause in the fact the threat of mortality is still present, ongoing or may return,” wrote Mighty contributor Colin Justin. “My intrusive thoughts and fears don’t focus on past trauma at all but instead consist mainly of fears about the future. So, if you feel in a panic but aren’t particularly troubled by memories of what has already happened to you, you’re in good company.”

It’s Not “All In Your Head”

For those with chronic illness, you may have been told by one (or more) doctors your chronic illness symptoms (like fibromyalgia or Ehlers-Danlos syndrome) are “all in your head” or a mental health condition, especially when the word “trauma” makes it into conversation. It’s worth repeating: Chronic illness is not “imaginary” or “all in your head.” You can have both a chronic illness and illness-induced PTSD, but they’re not the same.

Mead underscored this point in her article, “8 Things I Learned About Trauma After Being Diagnosed With a Chronic Illness“:

If you have a chronic illness and your doctor knows you have a history of trauma, they may have told you your symptoms are psychological or all in your head. This may have happened if you have an illness that can’t be diagnosed. This all-too-common perspective is traumatizing as well as inaccurate. It has also been disproven.

How PTSD Impacts Chronic Illness

Illness-induced PTSD can have a major impact on your life, including your illness. One study found those with PTSD were four times more likely to experience worsening chronic illness symptoms than those without PTSD. PTSD can also lead to other complications because it doesn’t just affect your brain — PTSD interacts with and changes your autonomic nervous system, which controls involuntary body functions like heart rate, digestion and sweating.

If you’re struggling with illness-induced PTSD, you’re more likely to avoid doctors, treatments and taking medications because they can be painful reminders of present, ongoing trauma. One study found stroke survivors were three times more likely not to follow their medication schedule when they had PTSD. You may also have intrusive fears around death and dying, which is common in illness-induced PTSD. Research has shown a recurrent fear of death makes it harder to follow through with necessary medical care.

How to Manage Illness-Induced PTSD

If you’re struggling with illness-induced PTSD and a lot of this information sounds scary, know you’re not alone. El-Gabalawy recommended working with a therapist with expertise in cognitive processing therapy, which “focuses on challenging and modifying unhelpful beliefs regarding their illness and the uncertainty of their health trajectory.” She also said acceptance and commitment therapy (ACT), which has a mindfulness component, is helpful for many facing illness-induced PTSD symptoms.

Daniela Paolone, LMFT, a Mighty contributor and therapist who provides therapy for those with chronic pain, illness and trauma, told The Mighty she recommends working with a chronic illness-informed therapist who can provide support, understanding and coping tools to help you manage your chronic illness, PTSD or both. She’ll often use mind-body approaches, relaxation and encourage self-care to calm your body’s stress responses.

Paolone offered a few other strategies for managing illness-induced PTSD:

• Attend therapy regularly
• Encourage loved ones to attend their own therapy because chronic illness affects your whole social network. This also can help them get the support and guidance they need to learn how they can best support you
• Seek mental health medication by working with your doctor or psychiatrist if needed
• Find a supportive network of loved ones who can go with you to medical appointments, help with your other care needs and be available during emotional ups and downs.
• Get involved in a support group focused on stress management, self-care or a support group for patients with a medical illness
• Engage in activities that promote expression like drawing, painting, making ceramics, journaling or dancing
• Do activities that promote body movement like gentle yoga, tai chi, walking or swimming as much as possible

And finally, when you can, don’t forget to introduce as much joy into your life as possible.

“In general, making time for enjoyable activities and spending time with loved ones that promote joy is so important,” Paolone said. “Making the most out of the good moments in life and taking the time to savor good times through laughter and play are very healing.”

PTSD and chronic illness?