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Living with chronic illness can easily lead to feeling like life has become mundane, perpetual routine of medical appointments, treatments, and feeling generally stuck in a rut. If we aren’t careful, we can spiral into depression that further negatively impacts our health and well-being.
While we are not always able to change life's situations, we do still have control of our thoughts and actions which ultimately impacts our perspective on life and our well-being as well. Below are some ways to aid with just that – changing perspectives to better our well-being.
Prioritize Self-Care
I’ve previously shared about my own journey of learning what I needed for self-care and how to maintain it. I had been stuck in a survival mode for decades between my own physical and mental health – I didn’t have the chance to properly learn even what self-care meant or looked like. Self-care looks different for everyone – it truly is a highly personalized practice. At a self-connection retreat, I attended in 2022, I learned many different self-care rituals that I had never thought of before. I absolutely loved the retreat; it was refreshing to my worn-down spirit and gave me new ideas for how I can care for myself. When we are in the depths of chronic illness, we can so easily forget that at times the basic necessities for our well-being are truly just that – necessities. Eating healthy, exercise, and sleep are vital for our bodies and mind for the bare minimum of functioning. Without adequate, balanced nutrition and sleep, our bodies will struggle to function – we need adequate calories just for daily survival, proper nutrients to maintain our electrolyte balance, and sleep for our body to repair itself. Without these keys, our immunity lowers, and our chronic illnesses can worsen. Exercise, of any kind for any amount of time, aids physical and mental health as well. Chronic illness can make exercise difficult for many of us. However, some is always better than none. For some, stretching may be the best and most appropriate form of exercise while others are able to perform more rigorous exercise such as running. The key is to keep our bodies moving as without movement, our muscles atrophy and are less able to support our bodies and pain can worsen significantly.
In the midst of surviving and managing all that comes with chronic illness, remember you are important and you deserve self-care.
Reconsidering Work Options
Not everyone with chronic illness is able to work and some may find it difficult to continue in their current career field. For example, I absolutely loved working hospice, however, my body is unable to tolerate the stress of traveling all day long, every workday. I need a job with minimal travel. I had to reconsider what I wanted to do and what my body could tolerate because of this.
Sometimes though, when faced with chronic illness our passions and expertise change. That’s why I started my rare disease advocacy with Life’s a Polyp, which has opened advocacy opportunities I never imagined or expected. For others, it may be a complete career change though. For example, a friend of mine decided she wanted to add to her own personal medical experience and expertise by becoming a nurse to help others with her same conditions. What an incredible way to apply one’s own learned expertise to be able to apply it daily to others going through the same experiences! For those with the same passion, travel nursing can be an opportunity to afford one not only the chance to help others but also allow for seeing the world, which may not have been possible previously due to financial constraints often experienced with chronic illness.
Finding Balance
Balance is a key part to self-care, something we often forget. Often times, we will dedicate the majority of our time to other pursuits – whether it’s work or simply daily survival. Either way, when our focus and activities do not allow for self-care, we are at risk of burning out, we become more exhausted physically and mentally. In learning what self-care meant for me, I had to learn what boundaries I needed and how to maintain those boundaries. Part of that was establishing a better work-life balance. I know that I need two days off in a row from work and I started taking at least one day off every month for myself and taking at least two weeks of vacation each year. At home, I set boundaries for my activities on the weekends to allow a continued activity-rest balance. Knowing our limits and learning to say no without feeling guilty helps us to preserve the energy that we need for self-care and recovery. That way, we can continue on.
Establishing New Friendships
Friendships and community make a world of difference, especially when it comes to rare diseases. I felt completely isolated and lost growing up not having access to community with others outside of my family with my rare diseases. I’ve found also that it can be hard to make new friends as an adult, being out of school and even making friends outside of work – where, let’s face it, most of us spend our time if we’re able to work. Thinking outside of the box of different ways to meet new people can be helpful in building new friendships to help us decrease isolation, grow our support network, and ultimately, also add to our self-care. Sometimes it can be difficult to let others in, we often guard ourselves due to our chronic illness in fear of rejection or lack of understanding from others – but leaving our comfort zone can absolutely be worthwhile and rewarding in ways we previously hadn’t imagined.
Living with chronic illness isn’t easy by any means, but we also don’t have to be fully consumed by it. Sometimes, we just need to think outside the box to change our perspective and allow new opportunities for self-fulfillment to occur so that we may shift from surviving to thriving with chronic illness.
