Defining Realistic and Empowering Goals in Life With a Chronic Illness

I have recently learned that we, people battling chronic illnesses and other disabling disorders, often need to re-evaluate how we define success, and learn to create goals that are fluid so that we may adjust them depending on our abilities at the moment.

For some time, I could not directly pinpoint the uneasy feeling I felt after listening to webinars from popular, enthusiastic, energetic and well-known life coaches.  That is until one day, after pushing myself beyond my limitations almost to the detriment of my personal health, I had a realization. All the while, I still found myself severely frustrated that I was unable to meet the goals I had set out for myself that morning. One might say I was even angry, disappointed and judging myself in a less than favorable light for  “failing” to meet my personal expectations.

As my home infusion nurse helped me to the couch, I realized that the messages “just do it,” “don’t be ‘lazy,’” “don’t hold back,” “push through it” and so forth not only did not resonate with me, but could be potentially dangerous — especially if I were to force myself to achieve the goals I had established for myself.  If I were to evaluate my success, at that moment, in the eyes of these particular presenters, the response would be much less than favorable.

Over the past few months, I’ve heard quite a few different life coaches present their various programs. Many have expressed a great deal of enthusiasm for planning, interacting and following through with established goals. The motivational and inspirational energy exuded by these individuals can be infectious. This can be very positive for the general population, especially those who are healthy and able to fully commit themselves.  However, many of these coaches have not resonated with me or others in the disability community.

I am a person who battles several severe chronic illnesses, resulting in a great deal of fatigue and needing to stay in bed some of the time, a good deal more than I wish.  “Just do it,” “just get up,” “get dressed,” “don’t be lazy” and similar sentiments do not ring true in our community. In fact, they can be very detrimental as they can lead someone to devalue themselves when unable to succeed and meet established expectations. It may even impact one’s self-image and mental health — especially those who have been made to believe their chronic pain is “only in their head.”

The mantras “just get up” and “just do it” are valid — for many, these statements are great motivators. Some simply need to hear “no excuses, just do it” and similar motivational statements. That being said, those with severe chronic illness who hear such sentiments might internalize them in a negative way when unable to perform at that level, and devalue themselves as well as their own “worthiness.”

Rather than negate the concept and necessity of goal setting, I want to encourage people to set goals within the realistic realm of one’s own abilities. The SMART principle can be helpful — Specific, Measurable, Attainable, Reasonable, Timetable. Moreover, I wish to teach people to be fluid in their goal-setting, so they feel comfortable resetting their goals based on that day’s abilities or even that moment’s abilities. I believe we need to empower people with chronic conditions to adjust goals as needed, rather than putting forth the “black letter rule” that holds people to rigid deadlines.

This message of fluidity in goal setting has not been clearly expressed by many of the motivational coaches I have encountered. Yet, I believe it is essential for those battling chronic illnesses, rare diseases or any other physical or mental limitations to feel they can create and adjust goals based on their abilities at that moment.

Moreover, I believe we need to address the fact there will be days, moments in time, maybe even weeks where we will not be able to achieve our desired goals. We must address this, affirm the situation and affirm that we still value ourselves/the person as an individual and for what they are able to accomplish. We need to teach people that it is perfectly OK to set very small goals, especially during more challenging times.

Encourage small, achievable goals one can do with little energy, yet still be of benefit to others. One such goal could be to create a card for a neighbor, community member sheltering in place alone, or someone in a senior citizen center/hospital. Small but achievable goals can help someone value themselves and their accomplishments.

I believe it is essential to teach people with chronic conditions and their caregivers how to create goals that are based on the abilities of the individual rather than external expectations. Let’s teach people to “redefine success” based on a realistic observation of their abilities. It is also just as important to help these individuals find activities or programs that help facilitate an accomplishment that benefits another individual — be it a pen pal or creation of a decoration or gift. Such activities can improve their self-image while helping to raise the spirits of another, thereby increasing their self-worth.