A mental health professional discusses effective coping skills for patients and caregivers impacted by incurable diseases like mesothelioma.
Mental health struggles are common after receiving a cancer diagnosis. Mesothelioma patients are at even higher risk of experiencing symptoms of depression and anxiety due to the unique nature and aggressiveness of this rare form of cancer.
It’s completely normal to feel a range of emotions about your illness, especially when the diagnosis was a complete shock. In some instances, when people share their diagnosis with their loved ones, they may feel dismissed or unsupported because they don’t appear physically unhealthy. This is where speaking with a mental health professional can prove beneficial.
“A lot of people with invisible long-term illnesses are told that since they look good, they should feel good, which invalidates their physical and emotional experiences with their illness,” reveals Nicole Ryan Carroll, a Los Angeles-based marriage and family therapist with particular expertise in treating individuals with chronic illnesses. “For example, we can’t see headaches, so we might think someone’s migraine is a small issue at best.”
Most of Nicole’s clients live with long-term illnesses. One of the most common refrains she hears from these patients is that they feel that they are a burden to their caregivers.
“Patients with chronic illness feel guilty and ashamed that their close family members have to assist them in several areas of their daily lives and feel misunderstood that these loved ones who don’t truly understand how their medical condition is impacting their emotional health,” she says.
At a Loss for Words: Grieving Your Old Life
After many hours speaking to people diagnosed with chronic illnesses, Nicole has noticed that these patients frequently experience a two-fold sense of loss: the loss of what their lives used to be prior to their diagnosis and the loss of what their lives could have become were it not for their illness.
“A lot of people mourn the loss of their old lives. They are also hurt because they were forced to give up their vision for what their careers could have been and what their family life could have been,” Nicole explains. “But I encourage them to explore those feelings in a safe space and to cry when they need to. Crying is a stress reducer that benefits the nervous system.”
Nicole tries to help terminally ill patients actively work toward accepting their new normal.
“Before acceptance can happen, there has to be a grieving process. There has to be a letting-go process. And a lot of that is helping clients get in contact with their grief because the only way to achieve acceptance is through grief.”
—Nicole Ryan Carroll, marriage and family therapist
It’s Okay Not to Be Okay
Constantly having to talk about their illness — whether at work, school, or among friends and family — can make some patients feel like they are reduced to their disease.
In these instances, Nicole helps patients make sense of their feelings by giving them a space to grieve and be angry.
“There is a general misconception that after you receive a diagnosis about an incurable disease, you suddenly have a moment of clarity and immediately accept your situation. But that’s not realistic. It’s okay to be angry and frustrated with what is going on in your life.”
—Nicole Ryan Carroll, marriage and family therapist
Specifically, she teaches her patients that it’s perfectly okay to admit that being sick is terrible, often applying the colloquial phrase “that sucks” during their counseling sessions.
“In therapy, you don’t have to perform for an audience,” she says. “You don’t have to put on a mask of gratitude and act like you are thankful for everything despite your diagnosis. You can be yourself and say what is really on your mind.”
Our trusted advocates with 65+ years combined experience are ready to assist you.
Step Outside of Yourself
While “mindfulness” might seem like a trendy buzzword, there’s scientific evidence that it really works. Studies show that mindfulness can help chronically ill individuals deal with the stress of their illness and improve their resilience.
As patients become accustomed to their new reality, Nicole recommends getting outside to practice mindfulness as part of the grieving process.
“With some patients, internal activities like meditation are counterproductive initially because they can increase the awareness of the pain they are in,” she explains. “They are already so focused on their bodies that it’s sometimes more calming to intentionally notice things outside of themselves.”
When it comes to external mindfulness, Nicole suggests that patients go on walks and intentionally take notice of their surroundings, such as the appearance of trees, the feeling of the wind on their skin, and the smell of the flowers they pass by.
She also shares that some of her patients have been able to alleviate their pain through complementary and alternative medicine (CAM), such as acupuncture, homeopathy, and massage therapy.
“I am welcoming to all of it,” Nicole says. “If it’s helping you, then that’s what matters.”
Help Me Help You: Advice for Caregivers
Nicole offers several tips to help caregivers manage their new set of assumed responsibilities.
Referencing the popular pre-flight message about parents putting on their own oxygen masks before helping others, Nicole emphasizes that taking care of someone else every day can burn us out if we routinely postpone or neglect our own needs.
She also suggests that caregivers meet with their own therapists regularly to talk about their experiences and concerns surrounding their responsibilities.
“If you don’t take proper care of yourself, you won’t have the energy or interest to help someone else. You show up every single day for a person that you love and care about, but constantly seeing them in pain and being needed to assist them is emotionally taxing.”
—Nicole Ryan Carroll, marriage and family therapist
Perhaps the most important piece of advice Nicole extends to caregivers is to just listen and refrain from presenting solutions, particularly as the patient is expressing the negative emotions and challenges they face in the wake of their diagnosis.
“Offering solutions often happens when a caregiver is genuinely attempting to help, so it stems from a good place with good intentions. But most patients just need a safe space to vent and express their frustrations without really wanting solutions,” Nicole explains.
In her experience, most patients with chronic illnesses prefer to seek solutions from their medical doctors and from other patients diagnosed with the same illness. But hearing solutions from caregivers heightens the patients’ awareness that they may be a burden to others.
“I think a good line to share with patients is ‘That sucks.’ Hearing supportive phrases like ‘It sucks that this happened to you’ and ‘It sucks that you’re dealing with this illness and this pain’ can actually have a positive impact on them,” Nicole shares. “Ask them what these experiences are like for them so that they can share their reactions rather than having to justify them.”
Speak Your Truth: Be Your Own Best Advocate
Nicole, who has launched her career as a disability advocate, empowers her therapy patients to advocate for themselves when they feel their concerns aren’t being taken seriously. In fact, she usually offers to join patients in conversations with their medical doctor, employer, or school administrator if they need help explaining their needs or requesting accommodations.
“If patients are at the doctor’s office and they want more tests or scans done, or they are considering getting a second opinion, I encourage them to speak up,” she notes. “If they have trouble with that, I offer to speak with these professionals as an ally who understands their unique needs. But mainly, I teach them self-advocacy so that they can work toward having their health care needs met through their own pursuits.”
The concept of self-advocacy is close to Nicole’s heart, as she has been diagnosed with multiple chronic illnesses. Drawing on her own personal experiences, she has been able to develop genuine rapport with her patients.
“Patients appreciate that I have the vocabulary around talking about these illnesses because I have a frame of reference from my own experiences,” Nicole shares. “That’s comforting for them because sometimes you have to explain your disease so much in a day that you’re tired of it. But they don’t have to do that with me. I can relate to them without all the detailed explanations because we have a shared understanding of living with these illnesses.”
Interestingly enough, it was the experiences she had with own health conditions that motivated Nicole to help others in similar circumstances.
“I know what it’s like to be on the phone with an insurance company for a long time because they either denied a claim or said a service was out-of-network, or you went to multiple doctors and were met with no answers about why your symptoms have been worsening,” she says. “These calls and visits can be very frustrating when you’re already so emotionally and physically drained from your illness.”
How to Find Mental Health Resources
If you or a family member have been diagnosed with mesothelioma, you do not have to navigate this difficult illness alone.
There is no shame in seeking help. From one-on-one therapy to support groups, there are a wide range of mental health resources available to mesothelioma patients and their families.
Contact our Patient Advocates at (866) 608-8933 for help finding emotional support.
