Coping With the Ongoing Trauma of Chronic Illness

Jeff Dubin
·6 min read
Doctor and patient in session
Doctor and patient in session

“In the face of the world’s harshness and danger, organisms of any kind develop protection — a coat of armor, a rigid system, a comforting ritual. For the short term, it may work, but for the long term it spells disaster.”
-Robert Greene, author of The 48 Laws of Power

Much of the writing on trauma concerns how to recover from a single severe trauma that happened in the past — a divorce, a death of a loved one, military battles, etc. These are often life-changing events with adverse emotional consequences that can last a lifetime.

But what about chronic illness? You have the initial trauma of being diagnosed and then the million (billion?) small, medium and large traumas of everyday life. These include, but are definitely not limited to:

  • Finding out the disease you thought was under control has come roaring back

  • Living in constant pain

  • Inability to do the activities you loved to do before you were diagnosed

  • Isolation due to said inability and a disappearance of friends who are either disturbed by your illness because it reminds them of their own mortality, or who think you’re a malingerer if you have an invisible illness

  • Financial burdens galore: loss of career, insurance that won’t cover fill in the blank, doctors who are out-of-network, the financial challenges you had before you got sick, etc. etc. etc.

  • Time, energy and money wasted on doctors who can’t help you

  • The endless wait for an appointment while you suffer

  • Caregivers who are stressed to the max and the accompanying guilt you feel

  • And many, many more

Related:How I'm Coping With Short-Term Memory Loss After a Myalgic Encephalomyelitis Diagnosis

I’m not a psychologist and one might take issue with some of the things I’ve classified as a trauma. So what? One of theDictionary.com’s definitions of trauma is “an experience that produces psychological injury or pain.” Living with chronic illness entails being confronted with experiences every day that produce psychological injury or pain.

A sensible approach to coping with never-ending traumas

What’s the best way to get through this grinding, endless marathon of traumas? One interesting approach I came across is the ACT approach. I don’t know if it’s the most effective one but it makes a whole lot of sense to me. It is an action-based therapy with has Eastern notions of acceptance blended in. How do they pull that off? Read on.

Joseph Trunzo, a psychology professor at Bryant University as well as a practicing psychologist, wrote a great article on ACT. While he treats patients with a variety of psychology issues, he has a particular interest in helping chronic disease patients live fuller lives and recently wrote a book to help those living with Lyme disease.

Related:How I’m Using Photography to Represent Life With Chronic Fatigue Syndrome

What is ACT? ACT stands for acceptance and commitment therapy. It sounds like ACT would benefit anybody regardless of whether they have a chronic condition, but Dr. Trunzo feels it’s especially well suited to those living with chronic disease. Trunzo says the core goal of ACT is to promote psychological flexibility. He says, “With chronic illness, rigidity in your thinking and behavior is the greatest barrier to living well with your illness. The only thing you can count on is the fact that you never really know what your day is going to look like, and that things are always changing.” When faced with crisis, though, we often circle the wagons and become more rigid.

“Be the thinker, not the thought”

Dr. Trunzo says psychological flexibility is about being mindful of the here and now and then responding in a way that “moves us forward” without getting caught up in all the negative emotions getting in our way. The professor says we give too much weight to negative emotions because “if our mind is telling us something, we tend to automatically believe it to be true.”

Related:What I Learned While Traveling With Chronic Illness

ACT doesn’t preach sweeping negative emotions under the rug though. The A in ACT, acceptance, is about acknowledging negative thoughts and the crappy circumstances that caused them. As Dr. Trunzo says, “spending all of one’s time and energy trying not to feel a certain way, or trying to change a currently unchangeable situation, is a fantastically inefficient and ineffective way to move through life.”

Ah, you might think, is ACT telling me to give up and let fate take its course? Not at all. It is telling you to take an inventory of what you value (e.g., spending time with your family, practicing good self-care) and deprioritizing those thoughts and actions that don’t help you to live these values. And it probably goes without saying that ACT is not asking you to do what’s beyond your physical abilities.

Trunzo gives the example of Donna, a woman with Parkinson’s. Donna had been a gifted guitar player until the disease robbed her of some of her playing skills. Sometimes she couldn’t play at all. Not surprisingly, Donna was devastated, and she initially chose to totally avoid playing the guitar because of the flood of negative emotions about her diminished abilities. However, she ultimately decided to lean into the pain of her skill loss and play anyway using new techniques accomodating her physical limitations.

According to Trunzo, Donna ditched the recurrent thought: “‘Everything I loved to do has been taken from me,’ because it was of no functional use.” Donna’s continued psychological flexibility also helped her when she was no longer able to play the guitar. Her solution: fiddling around on the less physically demanding keyboard and becoming an even more avid listener of recorded and live music. A core value for Donna is her love of music, which she let be her guide rather than her regrets about what she had lost (although she still has regrets). And that’s OK.

Closing thoughts

I recently listened to a podcast where the speaker took issue with using military terminology like “battle” or “fight” to describe how patients handle their illness. At the time, that point-of-view struck me as wrong or, at best, irrelevant. If someone wants to describe their brave attitude and actions as a fight against a disease, what’s the harm? And if a well-meaning friend talks about a patient’s brave fight, is that so bad?

However, reading the Trunzo article made me wonder if the podcast guy’s comment had at least some merit. My image of the classic warrior is informed by the old Chuck Norris and Arnold Schwarzenegger movies I loved where the hero mows down endless waves of bad guys. That’s the movies though. Is that realistic for us mere mortals? And certainly cowering in the corner is not a good option either. How about we replace the generic warrior image with one of a flexible, discerning warrior who selectively picks her battles as they arise? The Flexible, Discerning Warrior is not a very catchy name, I know. But I think it’s the wisest path, not only for those struggling with a chronic disease, but for the rest of us too.

What do you think?

Check out Joe Trunzo’s TedX talk, Living Well When You Don’t Feel Well: Overcoming Lyme Disease and Illness.

Read more stories like this on The Mighty:

When the Triggers for Your Illness Are Constantly Changing

The 5 Stages of Chronic Illness I Experienced (and Maybe You Have, Too)

The Best Analogy to Explain 'Energy Debt' With Chronic Illness