Urgent Call for Better Integration of Oncology & Mental Health Care
"While there have been monumental leaps within the biomedical sphere of oncology, there remains a stark disparity when it comes to the provision of integrated mental health care for cancer patients. The empirical evidence revealing the high prevalence of mental health issues, including depression, anxiety, severe mental illnesses and neuropsychiatric disorders among cancer patients, warrants an urgent call for a more holistic approach.
35–40% of cancer patients have a diagnosable psychiatric disorder according to ICD-10 criteria, which undoubtedly has a deleterious impact on their quality of life while also increasing healthcare costs."
Mental Health & Cancer
Just. Be. You.
There’s a lot of negativity inherent in a cancer diagnosis and the resulting journey, for obvious and not-so-obvious reasons. Fear, anxiety, anger, depression, uncertainty; it's a part of the package, unfortunately. Please give yourself permission to feel and work through your emotions without the pressure of being "positive" or "strong” or “inspirational.” Just be. Let the emotions, good and not-so-good, move through you. Just as we revel in the thrilling and the heart-warming moments, we also have to reconcile the traumatic and heart-breaking moments. And, honestly, it’s a bit much to handle once cancer enters the scene.
Toxic Positivity
It’s “toxic-something” every time we turn around, right? This time it’s toxic positivity. In medical office hallways, grocery stores, and even in our own homes, we’ve heard some version of “look on the bright side,” “don’t focus on the negative,” or “it could be much worse—you’re fortunate.” Why are people so convinced that this is good, or helpful, advice for cancer patients and their caregivers? Sure, our attitudes and moods interact with our physical bodies, but positive thinking alone has not and cannot cure cancer as we know it.
Furthermore, being blasted with sunshine and rainbows can have negative effects on patients and their loved ones. When our culture insinuates that a positive attitude is a key survival factor with cancer, what happens when someone "loses the battle" and passes away or their cancer returns after a period of remission? Are these patients somewhat responsible for the lack of success in their cancer treatments? Would it be empathetic or any bit truthful to say, "If only they had been more positive, they would still be here"? OF COURSE NOT. It's a farce, and society's requirement to maintain sparkling optimism at all times is a ridiculous burden to place on a cancer patient. LET PEOPLE FEEL WHAT THEY ARE FEELING. Sorry to shout, but I'm trying to reach the people in the back of the room. We, as a culture, need to stop equating emotional suppression with emotional resilience.
When we're surrounded by people who expect constant strength, positivity, and happiness, it becomes challenging and uncomfortable to be open and vulnerable about the negative emotions we feel. When the negative stuff is the bulk of it, that's when we need to get it out the most. The weight of this expectation only compounds the already heavy and hard-to-deal-with emotions we're harboring.
Why can’t we talk about it all? Why does someone always try to shine it up? When someone pulls the positivity card, it's like they're snapping a birthday hat around your chin and sending you on your "happy" way. It may represent the vibe they're going for, but 1) there is no party 2) it did nothing to change your mood or state of mind, and 3) now you're left wondering why you let them put a goofy paper hat on your head. It's annoying, at a minimum.
Get rid of the SHOULD. "I should feel..." "I should do..." "I shouldn't feel..." "Cancer patients should..."
It's all ridiculous. The only thing you *should* do is whatever the heck you want.
- You can complain.
- You can want this to stop.
- You can be angry.
- You can be sad.
- You can feel burdened.
It's okay. It's normal. It's authentic. There is courage in acknowledging and working through your feelings, even if they are negative. Ignoring or denying real feelings of pain, fear, grief, and doubt is not good for the body or the mind. The negative feelings will just keep knocking on the door if you don't answer the first time. Open the door, invite them in, and escort them back out after a short visit. Emotions are only intended to be visitors; not roommates, not residents, not extended-stay guests.
Please visit the Resource collection at the bottom of this page if you're looking for a support group, therapist, peer patient to speak to, or more information on coping with cancer. If you're experiencing a mental health crisis or suicidal ideation, please call 988 or visit the link below to chat with someone right now.
988 Suicide & Crisis Lifeline The 988 Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week in the United States. We're committed to improving crisis services and advancing suicide prevention by empowering individuals, advancing professional best practices, and building awareness.
Psychosocial Oncology
What is Psychosocial Oncology?
"Psychosocial oncology is a cancer specialty that addresses the variety of psychological, behavioral, emotional and social issues that arise for cancer patients and their loved ones. Cancer can cause significant distress for patients and their families. The type of distress varies based on each individual and family experience. It may be influenced by a variety of factors — including the type of cancer, where patients are in their life, and how they tend to cope with challenging situations. In the broadest terms, there are two psychological dimensions of cancer. The first is the emotional response patients and families have to cancer. The second are the emotional, behavioral, and psychosocial difficulties that influence living with cancer. Psychosocial oncology is the specialty that addresses all of these dimensions." (source)
Breaking Down the Power of Opening Up
Sharing Your Experience with Others
How can opening up make a real difference in the lives of others?
“Opening up” may mean talking to a close friend, a parent from your daughter’s school, an intimate support group, an entire church congregation, an audience at a patient advocacy conference, or just your doctor. It may include you divulging every last detail, sharing a small piece of your experience, or something in between. Sharing any honest experience or feeling with anyone in any setting can make a difference.**
Patients & Caregivers: Opening up can help other patients and caregivers realize their heavy feelings are not unusual, unnatural, or ruinous. You’re letting them know they are not alone, that nothing is wrong with them, and that there’s at least one other person who “gets it” like they do and was willing to share it.
Community & Public: When you are honest with others about the deep pain and fear you feel surrounding a cancer diagnosis, you are offering those people a bit of a heads up. This is what it's like. This is what’s real. You spread awareness. You help others emotionally prepare for a journey that's nearly impossible to prepare for.
Doctors, Researchers & Industry: Your voice and your experience can move the needle in how patients are supported and cared for in the future. When you share your feelings and struggles with your doctor, it turns up the volume, even if it’s just a touch louder. The more the reality of the cancer patient experience is exposed and discussed, the more doctors, drug makers, and researchers have to factor these patient experiences into their work. Once they’re aware of how patients are really feeling and doing, the more they have an obligation to do something to improve it. You’d be surprised to learn how little is understood of the emotional and psychological impacts cancer has on patients and their caregivers.
Long story, short: When you talk openly about how you’re feeling, you’re helping people in all directions and, bit-by-bit, you’re helping to change the experiences of future patients and the trajectory of cancer care in the US.
You can do it, or not do it, however you want. If you share, you’ll likely have more supporters and you may motivate others to get screened for cancer or to schedule that doctors appointment they keep putting off. If you keep it quieter, you’ll have fewer Nosey Nellies, less unsolicited advice, and less of an obligation to keep everyone updated on your journey.
One aspect of sharing your diagnosis that can be especially challenging is the pressure of having to be aware of and manage other people's reactions to YOUR cancer, often when you're still wrestling with your own reaction and emotions. As loving, nurturing, and empathetic as you may be, it is not your responsibility to carry that weight. Adults need to be responsible for their own feelings and should direct their needs for comfort, reassurance, hope, and understanding to someone else, anyone other than the patient.
“He rejected outright the added burden of trying to put others at ease. 'Az, I cannot begin to describe to you the psychic energy I have to invest just to carry on with business as usual given the dizzying turn of events I am facing on a daily basis. I don’t have energy left over to be concerned with how others are handling my illness. Even my own children. I want to, but cancer is draining in more ways than I imagined. You can talk to them if you want to, but I honestly can’t.'” -Azra Raza, MD in The First Cell with a quote from her late husband, Harvey Preisler, also an oncologist
**If and when you're ready to open up, of course. This is not an assignment. This is not something you have to ever do. Not everyone may realize the power of their voice and how talking about themselves can really help other people. I want everyone to know that it does make a difference, and the vulnerability and discomfort they have to wrestle to get there is very much acknowledged. This is a personal decision, and you should be the one who determines who knows, when they know, and how and what is shared with them about your personal health.
There is a resource collection at the bottom of the page with advice for sharing your cancer diagnosis with others and avenues to share your cancer story more widely. You can also visit our Survivorship page to read inspiring survivor stories across all cancer types and stages.
