Why Therapy Doesn't Always Work for People Living With Illnesses

“Therapy just doesn’t work for me.”

“We tried three different therapists for our son and none could help him.”

“My therapist didn’t understand what I was going through so I stopped going.”

Of course therapy works, I thought to myself, even though my inbox was being flooded with DMs like these.

I am a psychotherapist by trade, and I am also the partner of an adult with a progressive terminal illness called cystic fibrosis (CF). I started blogging about mental health in the context of serious illness when I first realized my fiancé’s mental health symptoms were going largely unnoticed by his care team.

The psychological burden of living with a serious illness can be quite different from the “traditional” mental health issues I treated in my own practice. For my fiancé, his mental health symptoms manifested as hypervigilance to any changes in his body and subsequent panic attacks when he noticed a change, bone-crushing survivor’s guilt when friends with CF died and an uncanny ability to block out emotions and dissociate from painful conversations.

None of these symptoms are typical diagnostic criteria for an anxiety disorder or depressive disorder, so it wasn’t particularly shocking when he was assessed for mental health symptoms using standardized tools (PHQ-9 and GAD-7), and they suggested that he was “totally fine!”

What did shock me was the theme of the messages I received in response to my blogs about mental health — therapy doesn’t work for people with CF.

Say what now!? Being a therapist (and having been on the other side of the couch, myself) I was dumbfounded by this persistent narrative. I know that therapy works. My derisory reply to these DMs was “try a different therapist…?” For months, I agonized over this issue. I did a lot of research, I talked to a lot of mental health professionals, and most importantly, I talked to a lot of people with CF.

I came to two conclusions.

Therapy doesn’t work for many people with CF because:

1. A significant amount of time of the therapy session is spent explaining the nuances of the disease to the unfamiliar therapist, reducing the amount of time left for an intervention

2. The most common therapeutic interventions, namely, cognitive behavioral therapy (CBT), only modestly adapt to the lived experience of serious illness. I will explain further below.

Generally speaking, CBT focuses on helping clients identify their thinking patterns, so they can modify difficult thoughts through the use of evidence and logic in order to feel better. Difficult thoughts are generally described as thoughts that are either untrue or unhelpful. This is a highly effective modality of treatment for most people. It goes a little something like this: A client with anxiety says to a therapist, “My friends think I’m boring.” The average therapist might encourage the client to examine the evidence for this belief, thinking of times when friends expressed enjoying the client’s company. This might help the client restructure their thought to, “I make my friends laugh,” or “My friends invite me to do things with them.” When the client is able to restructure most of their thoughts on their own, they then start to feel better. Here is another example: a client comes into a session and says, “When my husband is late coming home, I worry that he got into a car accident and I feel a sense of dread.” Again, a typical therapist may help the client challenge this automatic thought by helping them examine the likelihood of it being true (“the chances of that are extremely small!”) or unhelpful (“stressing about it won’t change whether he was in an accident or not!”). The premise of this most common kind of therapy is that changing an inaccurate or unhelpful thought will mitigate painful feelings.

Now imagine a client with a progressive terminal illness walks into a therapy session because he has been feeling depressed. He says, “I’m stuck on the thought that my life expectancy is only 35.”

Or how about a client with a serious illness who says, “I won’t progress in my career because I miss so much work being sick.”

Or maybe a client with a serious illness who says, “I don’t want to date anyone because no one should have to deal with my burden.”

Or my fiancé comes into therapy to say, “Whenever I have an itch that won’t go away, I panic that I’m having an allergic reaction to one of my medications.”

We can all agree that these are difficult, painful thoughts that can certainly trigger intense feelings of anxiety or depression. But… many of these thoughts may be true (like shortened life expectancy), and some are even helpful (like being hypervigilant to any bodily symptoms, like an itch). So, what is a therapist supposed to do with difficult thoughts like these?

Do you try to… put a positive spin on the difficult thought? “Even if you die young you can still have a good life!” “You’ll find the right person one day who won’t care about your illness!” “Anyone could die in a car accident at any moment!” “Try not to panic too much if you have a potentially life-altering symptom!” It suddenly became very clear to me why so many people with CF lamented that therapy doesn’t work.

If so many people with CF are unsatisfied with therapy, I can only imagine how many people with other serious illnesses face the same situation.

When it comes to the world of serious illness and rare disease, I don’t think the greatest problem in terms of mental health is access to therapy. Heck, I don’t even think the greatest problem is mental health stigma. I think the greatest problem is that most therapists are trained to identify and modify cognitive distortions (those thoughts that are inaccurate or unhelpful) but the “cognitive distortions” of people living with serious illness are often true and/or helpful, even if they’re painful. Therapists get “stuck” when trying to help these clients, and the clients end up leaving therapy unsatisfied and with pervasive mental health struggles. This quandary is why therapy is failing so many people with both serious illness and co-occurring mental health symptoms.

Fortunately, there are newer modalities of therapy for which thoughts are not the direct target of change. My personal favorite is acceptance and commitment therapy (ACT), which, instead, focuses on changing one’s relationship with distressing thoughts or feelings using mindful observation, defusion and other acceptance-based strategies. ACT has been studied as a treatment for people with cancer, systemic lupus erythematosus, HIV, multiple sclerosis, epilepsy and cystic fibrosis, among other disease states. ACT is best explained through metaphors. Imagine that all your mental health struggles take the shape of a monster. Your pain, your sadness, your worry and your difficult thoughts suddenly become a monster, and you are in a tug-of-war match with this monster. If you go to therapy to help your tug-of-war with this monster, you will most likely be met with a therapist who teaches you new ways to pull the rope, or a trick for grounding your feet or a way to try to convince the monster to go away. But if you go to a therapist who practices ACT, they will simply teach you how to drop the rope! ACT does not target the thoughts or circumstances that lead to pain and suffering… instead, it believes the struggle with the thoughts and circumstances leads to pain and suffering. For someone with a serious illness whose thoughts and circumstances are unchanging (without a medical miracle), this approach can be much more effective than traditional therapies.

The problem is, ask a typical therapist about ACT, and they may not even have heard of it, let alone be trained in it (mostly because it’s so new!).

The kind of depression experienced by someone with a serious illness is not the same as the depressive disorders you can read about in the DSM-5. “Feeling down” when you live with a terminal illness is different than the “feeling down” a typical person who battles major depressive disorder feels. It’s neurologically different. It’s hormonally different. And the same goes for anxiety and post-traumatic stress disorder! So why are we trying to treat these unique symptoms with the same old methods?

No one should have to “try three different therapists” before they find someone who actually knows how to help. No one should have to spend multiple sessions explaining the nuances of their disease to a therapist, who then spends the next few sessions implementing an intervention that won’t work. It is time we develop disease-specific treatments based on newer kinds of therapy like ACT, and train as many therapists as possible in these treatment interventions.

It has become my personal mission to develop new, gold-standard treatment protocols that recognize the unique psychological burdens associated with living with illness. What I want to know in the comments is, are you someone with a serious physical illness who has tried going to therapy? Did it work for you?