Grief can take many forms after a mesothelioma diagnosis, whether it’s your own or that of someone you love. A mental health counselor explains how patients and caregivers can better understand and process these emotions.
Being told that you have cancer triggers intense emotions. For people diagnosed with mesothelioma, the risk of anxiety, depression, and other mental health challenges is heightened due to the aggressive nature of this rare cancer and the uncertainty that comes with it.
A mesothelioma diagnosis can affect many aspects of daily life, especially when the news comes unexpectedly. During this period, grief and mesothelioma go hand in hand as patients adjust expectations, reframe their mindset, and establish a new sense of normal.
Some patients share their diagnosis with loved ones only to feel dismissed or misunderstood because they don’t appear physically ill. If the weight of mesothelioma feels overwhelming right now, speaking with a mental health professional can help you process grief in healthier ways.
“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 Brooklyn-based marriage and family therapist with expertise in treating individuals with chronic illnesses.
At a Loss for Words: Grieving Your Old Life
After speaking with many patients living with chronic illness, Nicole has observed that they often experience a dual sense of loss: the life they had before their diagnosis and the future they once envisioned. This is often referred to as anticipatory grief, or the mourning of milestones, independence, or time that hasn’t been lost yet but suddenly feels uncertain.
“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
Mesothelioma can take a toll on your emotions, finances, and overall well-being. Get our Free Mesothelioma Guide to learn about supportive care and other resources to help you navigate life with this cancer.
It’s Okay Not to Be Okay
Constantly having to talk about your illness — whether at work, during treatment sessions, or among friends and family — can make you feel like you’re reduced to the disease.
Nicole helps her 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 of 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.”
Grief counseling and therapy provide a space where patients don’t have to put on a brave face for others. 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.”
Mesothelioma Hope now offers a free monthly virtual support group for patients and caregivers to share experiences, learn coping strategies, and connect with others who understand. Sign up to join the next session.
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.
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.”
Nicole suggests going on walks and intentionally taking notice of your surroundings, such as the appearance of trees, the feeling of the wind on your skin, and the smell of the flowers you pass by. Some patients also explore complementary and alternative therapies such as acupuncture, massage therapy, or other practices that help them relax.
“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 Mesothelioma Caregivers
Caregivers face emotional challenges of their own while supporting a loved one with mesothelioma. Nicole often reminds mesothelioma caregivers of the importance of caring for themselves, using the familiar airplane analogy of putting on your own oxygen mask first.
“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
Caregivers may also experience anticipatory grief as they witness changes in their loved one and fear what lies ahead. These feelings can exist alongside love, hope, and dedication — and they don’t mean a caregiver is giving up or expecting the worst.
Nicole’s most important advice to caregivers is to listen without trying to present solutions. This approach is helpful when your loved one shares the challenges they’re experiencing during mesothelioma treatment and other aspects of their cancer journey.
“Offering solutions often happens when a caregiver genuinely attempts 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.
Caregivers often devote so much of themselves to their loved ones that they put others’ needs ahead of their own. Learn ways to reduce stress and care for yourself with our Free Self-Care For Caregivers Guide.
Speak Your Truth: Be Your Own Best Advocate
Nicole, who launched her career as a disability advocate, empowers her terminally ill patients to assert themselves if 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.”
– Nicole Ryan Carroll, marriage and family therapist
Interestingly enough, it was Nicole’s experiences with multiple chronic illnesses that motivated her 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.”
Get Personalized Support for Mesothelioma
If you or someone you love has been diagnosed with mesothelioma, you don’t have to navigate this path alone.
There’s no shame in seeking help. From one-on-one therapy to support groups and peer mentors, there are a variety of resources available to mesothelioma patients and their families to process feelings of grief and sadness.
Call our Patient Advocates at (866) 608-8933 or request our Free Mesothelioma Guide to get the help you need.
