How you can cope with chronic illness

For millions of people worldwide, chronic illness is part of day-to-day life. Chronic illness involves health conditions in which the symptoms don’t go away or lessen over time. Even though symptoms can sometimes be managed or minimized, the condition can never be completely cured. It is estimated that anywhere from 33%-44% of Canadians live with a chronic health condition.

Chronic illness is much more than a ‘physical’ experience – it impacts our mental health, relationships, career, hobbies and sense of identity. On top of coping with the illness itself, it can be overwhelming and exhausting to attend medical appointments, meet with different specialists and experiment with various treatments. Chronic illness touches every area of one’s life and because of this, it can feel incredibly daunting to manage. You might feel like your chronic illness is taking over your life, but there are ways to take back some control, manage your mental health and continue building a meaningful and fulfilling life. Here's how: 

Acknowledge the grief
There’s a deep grieving process that accompanies chronic illness and its various impacts. You may be grieving the parts of your life that have changed, the expectations you had for the future, or the shifts in your identity and sense of self. The grief related to chronic illness is rarely talked about, but it’s an important part of learning to live with your condition. Grieving is an ongoing process, but once grief is acknowledged, it starts to become more much more manageable.

There are tools that can help you acknowledge and process your grief. Many people find it helpful to journal or write a letter to their condition expressing their feelings of sadness, anger and disappointment. Others process this grief by connecting with their bodies in the ways that they can, whether it’s stretching, being in nature, taking warm baths or getting a massage. Sometimes, people find music, or creating a playlist for themselves, a way to process their heavy emotions. Other times, creative outlets, like art, drawing or crafting can be this guide.

Pace yourself
Fatigue, chronic pain and physical discomfort commonly accompany chronic illness. People living with chronic illness tend to cycle between overactivity – doing too much – and underactivity – doing too little. They tend to push themselves over their limits on ‘good days’ and try to get as much done as possible while they're feeling well. But this can result in a flare-up and cause them to be ‘out of commission’ for several days afterwards. This cycle only tends to worsen symptoms and mental health too.

Pacing can help break this cycle. Pacing involves using time as an indicator to schedule activities and determine how long to engage in a task. To start pacing, think of a task that you do regularly or an upcoming activity that you want to engage in. Then, estimate how long you can do this activity before experiencing a flare-up of your symptoms. After this, you’ll set your ‘baseline’ level, which will be half of the time it takes you to experience a flare-up or become uncomfortable. And then, your starting point should be half of your baseline.

In practice...
If you experience a flare-up after 30 minutes of walking, your baseline would be 15 minutes, and your starting point would be 7.5 minutes. Every week, as you walk, you can slowly increase your time by 5-10%. This creates a gradual re-conditioning process and builds stamina to avoid the over/under active cycle. Pacing is all about taking back some control over your daily routine, rather than your condition dictating when and what you’ll do.

Consider energy conservation 
Energy conservation goes hand-in-hand with pacing. It involves adapting the way you carry out activities so that you can conserve and maximize your energy. Some common energy conservation strategies involve prioritizing the day’s tasks, delegating to others whenever possible, or setting up your environment in a way that works for you. This could look like positioning frequently used items in a place that prevents bending or reaching (for example, in the front/middle of the pantry), sitting down when possible (for example, when putting on make-up, chopping up vegetables, or showering) and making use of electrical devices (for example, electric toothbrush, electric can opener, power scrubber).

Tackle your automatic thoughts
Our thoughts have a powerful impact on the way we feel and behave. Most thoughts pop into our mind so quickly and quietly that they are called “automatic thoughts.” We don’t consciously choose these thoughts and we’re usually not even aware of them. Automatic thoughts can be positive, negative or neutral and they are part of our self-talk. When living with a chronic illness, people may understandably experience negative automatic thoughts related to their condition and its impacts.

Noticing, identifying and challenging your automatic thoughts can help you manage your condition and improve your well-being. You may have automatic thoughts specific to your condition itself (for example, “this is unbearable"), your ability to cope (for example, “I can’t handle this”), others around you (for example, “no one cares”) or your future (for example, “things will never be alright”). You may also have automatic thoughts related to your grief (for example, “I shouldn’t be feeling...”) or activity pacing (for example, “I’m fine, I just need to try harder”).

In practice...
A good way to start challenging automatic thoughts is to ask yourself 1) What is the evidence that tells me this thought is true? and 2) What is the evidence that tells me this thought is not true? Then, once you’ve explored all the evidence available, you can use it to create a new thought. Even if your new thought doesn’t feel believable, it’s important to keep catching your automatic thoughts and forming alternative thoughts. With time and practice, your alternative thoughts will become more believable.  

Practice acceptance and value-based living
Often, resisting our reality creates more suffering than our reality itself. Acceptance is a powerful tool that can help us acknowledge our pain, without it leading to continued and worsened suffering. Acceptance doesn’t mean resigning control or being ‘ok’ with our circumstances. Rather, acceptance means that we understand that what we’re going through is real and valid. 

Acceptance also creates space to move towards our values and continue building a life that’s purposeful and meaningful to us. When we practice acceptance, we can start to base our actions off our values, rather than behaving in ways to minimize our pain and distress. Our values are our fundamental beliefs about what’s most important and meaningful in life – whether it’s adventure, family, community, freedom, achievement, etc. Research consistently shows that the key to living a happy, meaningful and purposeful life is by connecting to our values. Research also shows that living according to our values influences our long-term happiness more than any external circumstances, whether positive or negative. Re-connecting to your values and what’s important to you will help you envision and take steps towards a future that you feel hopeful and excited about.

In practice...
Here’s an example to help illustrate acceptance: Let’s say you're on a boat and it starts sinking - acceptance of this doesn’t mean staying on the boat and letting yourself drown. Acceptance would look like getting a lifejacket, jumping off the boat and swimming to shore. Acceptance means navigating the parts of life we don’t have control over, by taking control where and when we can. Acceptance means choosing to live a valued life, despite having a chronic illness that may contribute to pain and suffering.

MindBeacon recently launched a Chronic Illness program that guides you through skills and strategies to manage your condition and the impacts on your mental health.  If you're struggling, MindBeacon is here to help with a variety of supports available in our Virtual Mental Health Therapy Clinic. If you are part of our Workplace Mental Health Program, please visit your company page for access to services covered by your program.

Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4910465/
https://www.canada.ca/en/public-health/services/chronic-diseases/prevalence-canadian-adults-infographic-2019.html
https://www.health.gov.on.ca/en/pro/programs/cdpm/pdf/framework_full.pdf