31 Jul I Get It Now: What You Need to Know if You or Someone You Love Has a Chronic Illness
Written by Nicole Caines, R Psych
I’m going to start this post with an embarrassing story.
When I was fresh out of grad school and looking into possible jobs, I came across many postings for psychologist roles supporting individuals with chronic illness and chronic pain. Up to that point, I had been pretty fortunate when it came to health. I had never had to deal with any sort of serious or chronic illness and was pretty naive. So, without much context to help me understand why these positions existed, I found myself thinking “Why are there so many postings for chronic illness? That’s a physical problem, not a psychological one” (insert embarrassed face here…..)
Then, 2 years ago, the universe served me up a big serving of understanding in the form of my own illness.
Fortunately, I have a great medical team and a supportive husband and social circle and have been able to make a good recovery. However, the past two years have taught me a lot about the psychology of chronic illness. And, although chronic pain has not been a part of my experience, much of what I’m going to discuss applies there, too.
Here’s what I’ve learned about how illness impacts mental health (recognizing that each person’s experience is unique but that there are common themes):
Chronic Illness is fertile ground for the development of depression. In fact, it is one of the most common complications of chronic illness. Here’s why:
- Guilt and shame. Questions like “what did I do to cause this”? and “Why did I take my health for granted before?” can start to creep in and create guilt and shame.
- Social isolation. This can occur for a number of reasons. First, there’s the practical issue that many people simply don’t feel well enough to work or to go out and socialize, which leads to a lot of time alone. Or, your illness doesn’t allow you to participate in certain activities. For me, part of maintaining my health involves following a pretty strict diet. I had no idea how much our social structure revolves around food and alcohol, or how sensitive those topics are for some people, until I was forced to confront it. Second, there’s a sense of mental isolation that stems from our cultural attitude toward wellness and illness (we tend to think illness doesn’t exist unless we can see it) and our discomfort with struggle (we are uncomfortable allowing people to be ‘not ok’). Especially for those with invisible illnesses, the messages, both explicit and implicit, of “it’s all in your head”, “just think positive”, “get over it”, “don’t be so high maintenance” creates a sense of mental-emotional disconnection and isolation.
- Feeling like a burden or a failure. We live within a culture that is obsessed with productivity, financial success, and ‘doing’. The world teaches us that we are valued more for what we do than who we are. When you find yourself in a position of being unable to ‘do’ all the things you previously did that created a sense of value, you begin to feel like a failure and like a burden to those around you. Even when the people in your life are supportive, it is difficult to shut out those cultural messages and to value yourself in the absence of those external markers of success. It’s easy to slip into a state of believing people don’t want to be around you.
- Damage to self-worth and identity. Because the world teaches us to value ourselves for what we do, when we can no longer do these things, we question our identity and worth. If you had asked me to describe myself before, I would have said I was a psychologist, a dancer, a gymnast, a yogi, a dog foster mom, etc. – all characterizations that revolved around things I did. When I was forced to stop being all of those things (or, at least, to stop actively doing them), I was left wondering what remained: who I was and what made me valuable.
- Anxiety about health and the future. Chronic illness can create a lot of anxiety about health and about what the future will look like. It can throw your plans for the future on their heads and force you to grieve the life you thought you would have.
- Physiological implications. Lack of exercise, lack of exposure to sunshine, and medication side effects can all contribute to the development of depression, in addition to the actual biochemical mechanisms of illness. We sometimes forget how interconnected our bodies and minds are.
However, despite the difficulties, I’ve also learned that if you’re willing to look for them, there are hidden gifts to be found in the experience of chronic illness. For me, this has meant:
- Learning about the benefits of meditation. Prior to this experience, yoga was exercise to me. Once I was forced to slow down and dive into the more meditative and restorative forms of yoga, it opened my eyes to the benefits of meditation. During my most difficult times, when I was caught up in the difficulties I wrote about above, I could always go back to meditation to find a sense of peace. As a result, I am more grounded, aware, and mindful in my life now.
- I learned the value of slowing down. Being forcefully yanked out of the tornado of productivity that I had been living in allowed me to see that I could slow down and not fill every waking moment and that the sky would not actually fall (who knew?!). As a result, I have a more balanced life now.
- Getting clear on values and priorities. We tend to lump goals and values together. We think that meaning and fulfillment comes from attaining goals: “I’ll be happy when I lose 10lbs/buy my dream house/make a certain amount of money/etc”. There’s nothing wrong with setting goals and working toward them (we would be in trouble if nobody did!), but it’s not our goals that make our lives feel meaningful and fulfilling day to day, it’s living our values. The problem with relying on goals is that they’re always in the future. We don’t get to feel good about them today. But, our values (things like connection, health, contribution, balance, and adventure) can be lived every day. If we learn to use our values as our guide, our lives (and our goals) will feel much more meaningful. Of course, this means figuring out what our values actually are! When I was unwell, I had no idea what was going to become of my goals because I didn’t know what the future was going to look like. But, I learned that if I got clear about my values, I could make choices every day to do things that aligned with my values. And over time, that direction allowed me to create goals that were far more aligned with the life I wanted to be living.
- More compassion. I would like to think I have always been a compassionate person. However, I believe my compassion has grown through my experience of illness. I think I am more patient with people, less resentful, less reactive, more willing to sit with them in their struggles, and more willing to try to understand. And I’ve been able to more fully embrace the idea that everyone truly is doing the best that they can in any given moment. And, surely, we need more of that in the world.
So, what can those with chronic illness, and their families and friends, do to stop the spiral into depression? And what does the research say about what makes some people adjust more adaptively than others?
- To feel connected and valued. We need to know that despite the things we cannot do, we are valued for who we are. If you have a loved one with a chronic illness, ask yourself what you value about that person and how you can connect with that part of them.
- To learn to ask for help. There are people out there who will give us what we need, if we can muster the courage to ask for it. The more we feel connected and valued, the easier this will be. This might require some examination of the judgments we attach to receiving help.
- To stay active. The ‘rest and recharge’ approach to acute illness does not work with chronic illness and outcomes are worse. While flare ups may require rest, it is crucial to remain active. However, activity may need to look different than it did pre-illness. For me, this meant reframing physical activity as movement rather than exercise for a while.
- Early intervention. The longer the physical and mental/emotional aspects of chronic illness go unaddressed, the more entrenched maladaptive patterns become. Build your team of health professionals as early as possible.
- Healthcare professionals who believe you. Whenever possible, shop around until you find health professionals that don’t dismiss your concerns and that you feel comfortable with and supported by.
- To engage in self-management. Get informed about your illness and involved in your treatment so that you can advocate for yourself. Knowledge is power and feeling a sense of ownership over the management of your illness can give you a sense of hope and control.
- To acknowledge and express emotions. Avoidance and non-recognition of emotions is associated with poor adjustment. Ideally, we can express emotions in the company of another safe person. We are social creatures and being seen, heard and accepted by another is a powerful force for good. Find a way that works for you.
- An opportunity to identify potential positive outcomes or ‘hidden gifts’. Either on your own or with the support of a mental health professional, work toward readjusting your identity, getting clear about your values and priorities, managing anxiety, and highlighting the personal growth that can come from difficult experiences.
Click here for more information on counselling for chronic illness at Monarch Psychology.
Ridder, D., Geenen, R., Kuijer, R., & van Middendorp, H. (2008). Psychological adjustment to chronic disease. The Lancet, 372(9634), 246-255. doi:10.1016/S0140-6736(08)61078-8