Learning Bit by Bit
At 7 I was diagnosed with JIA and it has been a tough, unpredictable, but empowering journey. An important lesson learned is how crucial it is to address my health holistically. The physical part is hard enough, but there are so many facets of overall health.
Stress releases cortisol, which is inflammatory. We’re people with arthritis, so inflammation is not our friend. The stress from the disease itself is exacerbated by stress encountered in other aspects of our lives. There's pressure coming from many domains; school & work, family, friendships & peer pressure, the expectation to look perfect, considering romantic relationships, balancing finances, understanding your identity, and not to mention what is going on globally. Let's throw arthritis in for good measure. Chronic illnesses in childhood, adolescence, and adulthood are causes of significant stress.
We often associate grief with somebody dying, but adjustment to chronic illness involves many losses as well. Feelings such as denial- shock, guilt, anger, bargaining, & depression can and will appear throughout our lives as we encounter loss in our daily lives; this can happen because of arthritis as well. A study of young people with JIA showed that impairment in daily roles (eg., not being able to do the things you used to do) has been reported more stressful than uncertainty about the disease (Compas, B, Jaser, S, Dunn, N, & Rodriges, E 2012;).
Being aware that we do not have the ability to control everything that happens in our lives, whether it be the disease or anything else, brings us to address what we do have control of— how we respond. These life ups & downs are like waves of the ocean, constantly moving, unpredictable at times. Our ability to ride those waves successfully comes from a few things I've learned throughout my journey with JIA. As Carl Jung famously said “I am not what happened to me. I am what I choose to become.”
Putting up boundaries has always been a challenge. Now that I'm older, I recognize I have often pushed myself beyond my capabilities. We only have a certain amount of inner resources. For those of you who are familiar with the spoon theory [and if you aren't familiar with it I encourage you to look it up, the concept is that we must use and store our energy wisely because life depletes it. You're living with a chronic, painful disease most often invisible to others—that can be mentally and physically exhausting. Ask yourself what your priorities are and rank them from 1-10with10 being the most important. I recognize how sometimes my priorities were distorted; I was dedicating too many of my ‘spoons’ (or energy) to activities that were lower on my list. Ultimately, running out to address my most important priorities like my health, which includes both mental, physical and emotional health. Understand your priorities and give yourself permission to say ‘no’ sometimes. It's not a sign of weakness, it's a sign of strength and self-awareness.
When I don’t properly prioritize where I want to use my energy, I end up using too many ‘spoons’ for stuff that shouldn’t be a priority. Oftentimes, I end up short of energy to proactively address my mental health. This leads to more anxious thoughts, and sometimes these anxious thoughts grow & catastrophe. When you find yourself ruminating over stuff, your inner resources or “spoons” may be running low. There is considerable evidence suggesting engagement in active and accommodative coping strategies results in better adjustment in children, adolescents and adults with chronic illnesses. This is as opposed to disengagement coping, which is generally related to poor adjustment (Compas et. al, 2012). What does this really mean?
Be proactive rather than reactive with coping strategies. The same way you’re purposeful in engaging in physical exercise, stretches, checking your social media, doing homework, going to work, also include time for mental health self-care as a to-do item; get in the habit of incorporating this into your day. It doesn't matter what you do as long as it gives you joy and raises your energy. I love to meditate both formally using my headphones and many free YouTube meditation channels, or informally when I can go for a walk or sit in the backyard. Listening to music, being in nature, or reading are just some ways to effectively manage stress; others also love doing puzzles or adult coloring books. These are all forms of informal types of meditation as you are engaged in the moment. Again, the secret is to be proactive rather than reactive. Build up your inner daily resources so when they are drained by the many multifaceted stressors, you're not running on empty.
The benefits of healthy stress management and high levels of inner resources are limitless; developing self-confidence to be able to advocate for yourself, place healthier boundaries, cultivating more patience, trust in yourself and your decision making, acceptance for yourself and others, and letting go of energy that no longer serves you well. This is fundamental when responding to stressful situations we may not have any control of.
Compas BE. Psychobiological processes of stress and coping: Implications for resilience in childhood
and adolescence. Annals NY Acad Sciences. 2006; 1094:226–234.
Compas,BE, Jaser, S, Dunn, M, & Rodriguez, E. Coping with Chronic Illness in Childhood and Adolescence. Annu Rev Clin Psychol. 2012 April 27; 8: 455–480. doi:10.1146/annurev-clinpsy-032511-143108.