Coming to terms with a lung cancer diagnosis can be difficult. You might feel anxious, angry, or out of control. You might have difficulty sleeping or perhaps unable to even talk about your diagnosis. According to Leigh Ann Caulkins, MSW, LCSW, ACHIP-SW, Oncology Clinical Therapist at Inova Fairfax Medical Campus in Falls Church, VA, this is all completely normal. It’s called an “adjustment reaction.”
“My patients often experience these feelings and think they aren’t handling it well, or that they’re a mess,” says Caulkins. “However, feeling something, such as sadness or anger, is actually a very healthy response. It’s a sign you are dealing with it and trying to cope.”
Caulkins sat down with us to walk us through the stages to expect while coming to terms with a cancer diagnosis and some strategies to cope.
Grieve your diagnosis
Caulkins explains that accepting a cancer diagnosis is actually a grief process; patients and their loved ones are grieving the diagnosis they receive. Like grief, there will be days you might feel more optimistic, and days you feel overwhelmed by the fear of the unknown. You might feel a rollercoaster of emotions, such as sadness, frustration, despair, or like a weight is on you.
“It’s important to normalize and validate these feelings,” Caulkins explains. “It feels very overwhelming, but like any grief process, the only way to move past it is to go through it.”
Understand it’s not your fault
Many people want a reason for why this is happening to them. They look for a way that it could have been prevented or what they did wrong that caused it. However, Caulkins classifies this as a shame cycle.
“It can cause patients to get stuck in a loop,” Caulkins says. “I encourage people to focus on the here and now and the future. All the past behaviors – what you wish you had done, what you wished you hadn’t – it’s not your fault. There is no one or no action to blame. It’s important to have self-compassion, particularly when it feels hard, and realize this could happen to anyone.”
What’s important is to focus on what’s going to come next; that’s where the real work lies, according to Caulkins, not in what came before.
Find your coping strategy
While it’s common when we feel strong emotions to want to make it go away, medication isn’t generally the answer in cases like this. Medications, such as anti-depressants or anti-anxiety medication, are not necessarily effective – or needed – in short-term, intense distress, such as learning you have cancer.
Instead, Caulkins recommends you think back to past events or circumstances where you’ve been very distressed and determine what was helpful to you then. “We tend to have ways to manage stress or uncomfortable emotions that are partly innate, but we mostly develop through experiences. Identifying strategies that worked in the past will help you be successful in this situation too.”
For example, if you are a person who verbally processes information, identify a person or a group of people you feel safe discussing your feelings with. If you like to cope privately, you need to allow yourself time and space to sit and feel your emotions. If you tend to freeze or shut down when you get bad news, you might try breathing exercises or guided mediation to help you stay grounded.
Adjust to your “new normal”
It’s not easy to reach acceptance around a cancer diagnosis. However, Caulkins says there are a few strategies to help.
“Reframing your experience as one of healing and recovery can sometimes be helpful, particularly around temporary changes,” Caulkins explains. “If you are feeling new fatigue, more nauseous, or changes to your physical appearance as a result of your treatment, associating these changes with recovery and defining them as steps on your way back to familiarity often gives people the boost they need to persevere.”
Another strategy Caulkins recommends is substitution. For changes that might be more permanent, such as lasting changes from surgery or effects from long-term treatments, finding a replacement that is conscientious of your new limitations can be reassuring and reinforce the idea you can still feel joy and satisfaction even though it might look different. For example, if you enjoy running, but are no longer able to, finding a new cardio exercise, such as biking, might result in the same high running gave you. This helps you feel more connected to who you are and makes the changes a bit more manageable.
Know When to ask for extra support
There are a few signs that you might need a little extra help to properly grieve and accept your diagnosis. Caulkins says if it’s been about six weeks to two months and you still aren’t feeling yourself, or if your mood is impacting your ability to make medical decisions, or your sleep schedule is still off, it might be worth exploring your support options.
“It’s not uncommon to need additional support when accepting a cancer diagnosis,” Caulkins says. “It completely rocks your world – you question your mortality and even your identity. As a human, that is really hard to process.”
If you have a caregiver or loved one you trust and feel safe talking to, Caulkins recommends you start there. If that doesn’t feel safe, or doesn’t help, your oncologist will have recommendations on next steps and referrals to who can help.
There is no right or wrong way to feel after being diagnosed with cancer. However, it is important to take care of your mental health, just as you would your physical health. Caulkins explains there is a correlation between mental health and quality of life. “Day to day, short term and long term, quality of life is significantly better for those who are not intensely distressed.”
If you are experiencing difficulties maintaining your mental health, be sure to talk to your doctor about tips on how to cope and other recommendations.
Newly diagnosed? LUNGevity has resources to help.
Leigh Ann Caulkins is a Licensed Clinical Social Worker who specializes in providing evidenced-based treatment to adult patients and their caregivers, as well as any adult in the community affected by a cancer diagnosis. Her areas of expertise include the lived experiences of those with chronic illness, end-of-life, grief, meaning-making, mindfulness, existential /spiritual distress related to illness, and adjustment to diagnosis.
Leigh Ann received her Bachelor of Arts in Psychology from Argosy University and her Master of Social Work from the Catholic University of America with a concentration in Clinical Healthcare. Prior to joining the Life with Cancer team, Leigh Ann worked as a clinical therapist on the adult and pediatric palliative teams at Fairfax Hospital, and with the Inova Juniper Program providing psychotherapy to adults diagnosed with HIV/AIDS. These experiences have provided Leigh Ann with an appreciation for the unique needs of those individuals living with chronic and/or life-limiting illness.