Chronic Illnesses: When Sticking to a Routine Gets Hard

Navigating life with a chronic illness can get very difficult. I live with one I would like to forget about daily, but I am routinely reminded by the frequent episodes of morning stiffness, cognitive impairment and sleep disturbances. Life with a chronic illness is unpredictable, painful, frustrating and extremely stressful. The effects take over all aspects of your life that can sometimes be indescribable.

I sit here writing these words at my desk, with my neck and shoulders feeling like they’re on fire, one of the many effects of my condition. At home, I struggle many days trying to maintain our routine, especially when activities are happening for the kids. I had to quit my job earlier this year as a human resources professional. The unbearable pain from long periods of driving, extended periods of sitting, and fibro fog made it difficult to hit the ground running. The concerted effort to conserve energy so that I can be present as a mother to my two younger children when I got home brought the two areas of my life in conflict. I had to grapple with the fact that I can’t do it all or be it all. 

“Life requires two things from us; to be flexible and to be open.”

Routines serve a significant purpose in productivity and stability. It is a pathway to achieving goals, maintaining mental health, and fostering a sense of control. However, for people living with chronic illnesses, sticking to a routine can be a complex challenge. Chronic illnesses, characterized by persistent and often fluctuating symptoms, demand a level of flexibility and adaptation that conventional routines rarely accommodate. 

Let’s dive into the many ways in which chronic illnesses complicate maintaining routines, and explore strategies to navigate these difficulties.

The Nature of Chronic Illnesses

Chronic illnesses encompass a wide range of conditions, including autoimmune diseases like lupus and rheumatoid arthritis, metabolic disorders such as diabetes, and neurological conditions like multiple sclerosis and fibromyalgia. These illnesses often present with symptoms that can vary dramatically from day to day or even hour to hour. Cognitive impairment, pain, fatigue, and digestive issues are just a few examples of symptoms that can interfere with daily activities. 

Chronic illnesses persist over long periods, often for a lifetime. This means that individuals with chronic illnesses must constantly balance our health needs with other life responsibilities, such as work, family, and social commitments.

The Challenge of Unpredictability

One of the most significant challenges to maintaining a routine for people with chronic illnesses is unpredictability. Flare-ups, which are a sudden and severe increase of symptoms, make the simplest tasks like getting out of bed or preparing a meal, or even taking a shower feel almost impossible. 

A few months ago, I started working out with a friend two times per week, but after about a month of consistently showing up, a flare -up made these plans impossible. As part of my care routine, I continued working out at home, but I have yet to return to working out with my friend. Part of it is that I do not want to cancel future appointments due to another flare-up, so to avoid that kind of conversation I simply have decided to stick to working out alone or at home.

Energy Management: The Spoon Theory

Christine Miserandino's Spoon Theory is a widely accepted metaphor that illustrates the energy limitations experienced by people with chronic illnesses. According to this theory, individuals have a limited number of "spoons" representing units of energy available for daily activities. Healthy individuals typically have a seemingly unlimited supply, but those with chronic illnesses must carefully ration their spoons to get through the day. 

For instance, taking a shower, cooking breakfast, or driving to work all require spoons. Once these spoons are used up, the person may be too exhausted to continue with other planned activities. This constant need to prioritize and conserve energy makes it challenging to stick to a fixed routine.

The Mental Health Component

One of the big hits of living with a chronic illness is the significant toll it takes on your mental health. Conditions like depression and anxiety are common among individuals with chronic illnesses, partly due to the ongoing stress and uncertainty associated with our health. 

These mental health fluctuations can further complicate the ability to stick to a routine. On days when depression is overwhelming, the motivation to complete even routine tasks can be non-existent. Anxiety can cause people to overextend themselves in an attempt to compensate for perceived shortcomings, leading to burnout and an inability to maintain a consistent schedule.

Social and Professional Impacts

The difficulty in maintaining a routine can have broad social and professional implications. For instance, I struggled at times to meet the expectations of my previous employer who needed consistency and reliability. This led to me feeling insecure about my position and a loss of professional identity. I frequently questioned if I was cut out for this, but the downplayed how my chronic illness played a huge role in my performance. 

Socially, the unpredictable nature of chronic illnesses can strain relationships. Friends and family may not always understand why we have to cancel plans frequently or why we might need to rest instead of participating in activities. This can lead to feeling isolated and frustrated.

Adapting Routines to Fit Individual Needs

Given these challenges, it's crucial for people with chronic illnesses to develop adaptable routines that account for our unique health needs. Here are some strategies that can help:

1. Flexibility is Key

Rigid routines are often impractical for those with chronic illnesses. Instead, flexible routines that allow for adjustments based on daily health fluctuations are more effective. This might mean having multiple versions of a routine: one for high-energy days, another for low-energy days, and a third for days when symptoms are particularly severe.

2. Prioritization and Delegation

Identifying the most critical tasks and focusing on those can help conserve energy. Delegation is also vital. When possible, delegating tasks to others can alleviate the burden. If you live alone or cannot delegate much to others professionally, I encourage leaving critical tasks for another day and communicate your need for help from supervisors. 

3. Momentum over Motivation

Prominent podcaster Mel Robbins speaks eloquently about creating massive momentum in situations of anxiety and depression, On your way to doing hard things, you will lose motivation, but momentum on the other hand is what can sustain you. Getting in the habit of completing small tasks that accomplish big goals is a way forward for sufferers of chronic illness sufferers.

4. Incorporating Rest and Recovery

Scheduling regular breaks and rest periods into the daily routine can help manage fatigue. This might include short naps, meditation, EFT tapping or simply quiet time to recharge.

5. Using Technology for Assistance

There are numerous apps and tools designed to help with task management and scheduling. These can provide reminders, track symptoms, and help plan activities around fluctuating energy levels. Examples include health tracking apps that monitor symptoms and provide data that can be shared with healthcare providers.

6. Building a Support Network

Having a strong support network is invaluable. A therapist or support groups either in-person or online, can provide a sense of community and understanding. If you’re fortunate, friends and family can offer practical assistance and emotional support, making it easier to navigate the challenges of daily life.

7. Self-Compassion and Acceptance

Perhaps one of the most important aspects of managing a routine with a chronic illness is self-compassion. This is something that I actively had to work on in therapy. It's vital for us  to recognize our limitations and not judge ourselves harshly for needing rest or being unable to stick to a routine. Acceptance of our condition and its impact on daily life can reduce stress and improve overall well-being.

Sticking to a routine is undeniably challenging for people with chronic illnesses. The unpredictable nature of these conditions, coupled with the need to manage energy and mental health, requires a flexible and compassionate approach. Ultimately, the goal is to find a balance that allows for the best possible quality of life, despite the limitations imposed by chronic illness.