When life throws the unexpected at you, through a cancer diagnosis for example, we quickly feel like we lose a sense of control over what’s happening in our lives. We become a “patient,” and are thrown into a world with foreign terms, unclear prognoses, treatments, drugs, surgeries, new priorities and routines that affect all areas of our lives – physical, relational, and emotional – and our sense of self and agency.
So what are a few ways to gain a sense of control over your life when cancer becomes a part of it? Here are three concrete ways to boost resilience and take action during your experience with cancer.
What we’ll cover in this blog:
Sense of agency/control and why it’s important
How to gain control of your life during cancer
Sense of agency and control and why it’s important
People need to feel a sense of control and agency over their own lives. A sense of agency means feeling in control over the actions we make as individuals and their consequences. In essence, it means being in the driver’s seat of life and being able to recognize that we are the driver – able to initiate, execute, and control actions. It’s the subject of a lot of research, from psychology to philosophy to neuroscience and computer science and plays a significant role in your mental health. Why? Because it determines your capacity to be psychologically stable – to feel in control of your life, believe in your ability to handle different situations, and have power over your own behaviors and thoughts, separate from the external world around you. Having a sense of agency means you also increase your capacity of being flexible and resilient.
Here are 3 tips on how to regain a sense of control for life with cancer.
1. “Ask me about my mental health”
Ask your doctor or healthcare team to ask you about your mental health. Literally, at your checkup or appointment or after they’ve run through the checklist, ask them “What about my mental health?” If you make it clear that you need or desire support, the more likely you’ll get your hands on the resources to help you get there. Taking this concrete action is a way to increase the agency over your life amidst the chaos of cancer.
Data from our latest Health Study shows that 71% of participants believe their mental health has declined during cancer treatment and that 86% believe healthcare should refer people diagnosed with cancer to a therapist/psychologist. We invited key players in the cancer space to discuss these findings – among them, Hans Hägglund, M.D., Hematologist, Professor, Sweden’s National Cancer Coordinator.
Hans highlighted the power of our voice as the patient – that is, people going through cancer are in the driver’s seat over their cancer care but often feel like a passenger – things are going in a certain direction or happening to you but are at a loss at knowing what to do about it. Asking “What about my mental health?” means you’re taking action and affecting the outcome of your mental health during and after cancer, which is huge in feeling agency over your own wellbeing. That’s the first step.
2. Educate yourself about what your options are and take action
With cancer comes a huge learning curve. From vocabulary to getting to know your body and mind in ways you didn’t think possible, there’s a lot to learn and it’s easy to feel overwhelmed and lost.
An effective way to introduce control and agency into your life during this time is to take the position of a learner. Learn everything you can. Education, by default, makes you feel less threatened by what you’re facing. The unknown becomes tangible, you can understand it intellectually, and that helps you make informed and independent decisions.
The best way to learn things is by getting curious. For example, when you don’t understand a term or what something means, ask. What side effects may this treatment give? Ask. Are there clinical trials that could be relevant for you in your situation? Look into it and present these for your healthcare team. Journal about what’s happening, physically and emotionally. When you’re feeling low, ask yourself why it is you feel that way and what action you can take in order to counteract those feelings.
Watch this session with Pyschologist, Hana Jamali, about how to leverage curiosity when losing and redefining yourself because of cancer.
The more you learn about what’s happening in your body, mind, and spirit throughout your experience with cancer, the more able you’re to manage side effects, emotions, and support yourself.
This isn’t always easy – sometimes we feel like a failure or that even if we learn about something, it’s very hard to change the outcome. But by taking the lens of learning about your situation and those around you, you minimize the amount of unknowns and maximize your opportunities to take action over the situations you can influence. Feel like you’re still failing? Learn how to deal with that emotion. Where it comes from. How it shows up. Curiosity is an empowering tool.
Don’t know where to start or turn to? Join the War On Cancer community where no questions about cancer are off limits. Learn from people who’ve been through it and experts in the field.
3. Control what you can during cancer in tangible ways
Sometimes, however much we intend to take action and agency over our situations, it can feel too hard to summon the energy, dedication, or desire to do anything, especially when experiencing cancer. That’s okay.
The first action you can take is to be loving and empathetic towards yourself, knowing that it’s okay to be low, to feel down, to let things get to you. When it’s time to help yourself get back up when feeling down, do so by taking small actions within your control to help you rest and reset from the feeling overwhelmed or losing control during cancer. Focus on your breath. Journal your thoughts (or voice-record or video them, whatever means you feel works best for you). Play a song or call a friend. Engage in a hobby that stimulates your intellect.
Once you’re in a place where you feel more ready to take action, use curiosity to figure out what it is you can take action on. Maybe it’s going out for a walk. Or eating a healthy meal (tips on nutrition during cancer here). Perhaps sharing that meal with a loved one or petting an animal. Smiling at a nurse. There are micro-moments in your every day that you can choose to control, and however big or small the action may seem, the feeling of agency is much larger and much more powerful. The road may be bumpy but putting your hands on the wheel and learning to navigate it will encourage you to keep taking new actions and lead on your life, as you choose to live it.
Learn more about gaining control with cancer in the War On Cancer app from people who know what it’s like. Or, share your knowledge with others who need it.