Living With Chronic Illness: Resilience, Rest, and Adaptation
Chronic Illnesses are some of the most difficult conditions to manage because of their nature of being long term. It is not about getting treatment to cure a disease but to find ways to manage symptoms for the rest of your life. Given how overwhelming the timescale is, it can place a heavy toll on the mind. This post will discuss some of the common barriers to mental health and tools to combat them. Of course, we cannot cover all issues related to chronic illness but the hope is to address the parts that are more commonly brought up in day-to-day life while encouraging further exploration and connection with support systems. Living with chronic illness is about finding freedom in new ways through awareness, knowledge, and creativity.
How Resilience can Make Things Worse
One of the primary challenges associated with chronic illness is the expression of resilience because by its very nature it is required for the entirety of the person's life (barring any medical advancements). It is incredibly difficult to live a life that is based on “just enduring” suffering because much of the time endurance is built on the assumption that it will end. This can present a dangerous existential dichotomy between life and death, leading to a detriment to mental health based on black and white thinking. While this is not universally true and some people do find strength in their self-concept of being resilient; much like motivation, it can be a limited resource that leaves us wanting in darker times. Therefore, it can be beneficial to direct our efforts towards other routes of self-expression to diversify the avenues of wellness while carrying chronic illness. Perseverance is admirable and necessary at times, but it is not the singular trait of a life worth living. Consider exploring other ways to define yourself beyond perseverant. Can you also be creative, knowledgeable, curious, compassionate, generous, empathetic, competitive etc? Identity includes many things but a challenge of chronic illness is that it pulls us to feeling like it is just one.
Believing in Yourself When Others Won’t
The beginning of life with chronic illness requires a lot of adaptation and learning not just to care for self but to also defend your right to tools and strategies that improve wellness when those around you do not know enough or cannot understand enough to acknowledge or accommodate your needs. This can cause an internal rift where, due to the illness, you have to become confident enough to advocate for yourself while also compassionate enough to allow yourself to rely on others. The process takes time, finding the right people takes time, finding the right care takes time, adaptation takes time. But time does not heal all wounds, it is what we do with that time that makes the difference.
Advocacy in an Unbelieving World
Beyond the infuriating reality of biases in the healthcare systems that lead to suboptimal outcomes for minorities and peoples of diverse backgrounds; those with chronic illness can also find barriers to supportive care and often describe instances of not being listened to or being dismissed. One way to improve self-confidence and even potentially increase the chance of positive outcomes is to use communication tools that connect with healthcare professionals. One example of this is preparing for appointments using the acronym O.F.A.I.D. This stands for Onset, Frequency, Antecedent, Intensity, and Duration. When describing symptoms using this tool you may find more efficient and accurate navigation of healthcare systems. Also, antecedent is just a fancy word for the thing that may have happened right before symptoms started - like did you fall down the stairs right before your leg started hurting?
Rest
Rest can be hard to come by when living with chronic illness and not just because of the physical challenges faced. However, chronic illness necessitates chronic rest. It can be difficult to adapt to the increased need for rest-related accommodations because of
your own beliefs about productivity or value as well as the messages received from people in your social orbit that cannot or choose not to flex when met with your new circumstances. While it can be difficult to accept the changes that come along with the choice to let go of that which works against your new normal - you cannot base your decisions about rest or self-care on the perceptions or experiences of others. If that means your social connections change then so be it. Comparison is the thief of joy and in this case a healthy life. By prioritizing your own specific needs based on your chronic illness and wading through the uncertainty period between what was and what can be; you will find a much better life that takes care of your needs first thus freeing up your mind to pursue fulfillment, joy, intrigue, creativity etc. There are
many ways to rest including by looking at the different parts of wellness and considering what parts need rest and what rest looks like for each part.
Adaptations to a New Normal
Social
A common experience for those with chronic illness is finding out there is often an increase in effort related to comforting or educating those around you. Family and friends likely will become and continue to be sad or worried about you (unless they distance themselves which is also unfortunately common). As such you may find yourself feeling burdened by having to reassure them regularly. If this is the case, there are some tools that can support streamlining communication in the pursuit of lessening effortful interactions. Setting boundaries such as agreeing not to discuss an illness during an otherwise happy event like a birthday can provide a reprieve from always having to think/talk about it. More generally, coming up with a trigger word of sorts that acts as a quick tool to know when to engage in supportive treatment talks or social comforting. This creates a shared understanding that unless that word is used, everyone can enjoy each other's company without having to worry about the illness. For many this can encourage a sense of self not defined by the illness which is hard to come by but deeply valued by many.
*To be clear - this is not implying that those with chronic illness are somehow a burden if their illness is included in social interaction and ignoring it is somehow necessary for true enjoyment or value within their community. Rather, it is considering the long term experiences of many with chronic illness by focusing on how to manage burnout associated with being around those who care for you and know you are facing difficulty but don’t know how to help.
Emotional
Anxiety, depression, and PTSD are all common co-occurrences with chronic illness and if unchecked can morph beyond worry and sadness into anger, hopelessness, and despair. Though there are many tools for these mental states one of the more targeted options for chronic illness specifically is to shrink the world around you either internally or externally. If chronic pain is a consistent beacon of dread amidst the foggy landscape of life; can you pause and contemplate how the chilled, dense, foggy air feels as it rushes into and out of your nose. Can you shrink your perception to a manageable level that gives a singular moment of calm? How many moments like that can you string together? Doing so may provide - however subtly - a sense of control and choice that can be rare for those with chronic illness.
Reigniting Hope While Managing Chronic Illness
All of these pieces together aid in supporting the long term health and fulfillment of life in the midst of managing symptoms. Mental wellbeing takes adaptation and the choice to do so is expressed both in the internal/psychological realm as well as the external/social one. By developing the tools to bolster self-confidence and compassion through communication and rest respectively you can avoid or at least lessen the negative impacts of some of the common complaints associated with chronic illness. While we have focused on the mental side of chronic illness, it does most often require a deepening of medical knowledge and physical health about the specific changes associated with the illness you are dealing with. Spending time developing all areas is what ultimately improves wellness as a whole and as such there are further resources for review at the bottom of this post.
Furthermore, the issues focused on above are just a few of the unique challenges faced by those living with chronic illness and are by no means a complete account of the ways this population can find mental health support. At RAFT Counseling our focus is to help you embrace healthy change and develop authentic connections - especially those that empower you on your journey of managing chronic illness. We would love to provide support to you or a loved one in having a space to process the often overwhelming conditions while walking with you as you develop your version of a wellness focused life. Simply visit our website or contact us to get connected with a counselor who can support you on your journey.
Further Resources and Reading