When you’re managing symptoms, juggling appointments, trying out new treatments, and navigating daily life, you probably don't want to add anything else to your plate. However, finding a sense of purpose through hobbies, personal goals, or professional endeavors can be incredibly rewarding and supportive when living with chronic illness.
Finding Purpose When Life Feels Limited
Having something you genuinely care about and that brings you excitement, can make a big difference in how you view yourself and your circumstances. When you connect with a purpose, it builds resilience, creates hope, and offers a sense of accomplishment. Also, experiencing joy releases “feel-good” hormones which can improve our emotional and physical health.
When our capacity is reduced, it can feel like options are limited, and that might be true. However, while some aspects of yourself seem lost, new strengths and opportunities can emerge. You may be pleasantly surprised by what you discover and gain as you work toward your goals.
My Journey toward Purpose
Around the time I developed fibromyalgia, I co-founded several recycling initiatives, including a start-up. I’ll be the first to admit that I did not pace or regulate stress well during this period. I took on more than I could handle, had a lot of stressors and didn’t always seek the support that I needed.
However, despite making some mistakes, I do believe that having these goals helped me so much in the long run. I had a purpose beyond myself and my chronic illness to which I could dedicate my time and energy. I drew inspiration from the team work required to build something and gained confidence by realizing that even challenges (or flares) couldn’t stop me forever.
With limited energy, I focused on identifying tasks I genuinely enjoyed and excelled at, while letting go of those I didn’t. It was affirming to realize that my goals were truly meaningful, as I had to make intentional decisions and prioritize based on my limitations in order to pursue them.
How to Discover your Purpose
Everyone's purpose and interests are going to be different; they can even change throughout your life. If you’re trying to figure out your current purpose, below are some tips:
Reflect on people who you admire- what qualities do they possess? This helps you assess where you might be similar, and where you may want to focus.
List all of your qualities- what are some examples from your life where these qualities served you (and others) well?
Brainstorm some intentions that are currently important to you (and align with key qualities)- what’s important for you to embody, and what does that look like? Ex. if your intention is ‘‘being a successful business owner’ or ‘active and healthy’; what does successful mean to you? What does healthy look like to you?
Rate each of your intentions- on a scale from 1 (relatively unimportant right now) to 5 (very important right now). Remember, they can’t all be 4’s and 5’s at the same time!
Try not to edit yourself too much during the brainstorming stage. Just let the ideas flow, and keep an open mind, there might be some interesting revelations you discover during the process.
Working towards your Purpose
Gentle Goal-Setting
Gentle goal-setting allows you to make progress while respecting your limits. The key is to set achievable, meaningful goals that align with your current capacity. Over time, these small steps can build into something bigger, fueling your sense of purpose without overwhelming you.
Now that you have your short list of your intentions (4’s and 5’s), it’s time to set some goals:
Realistic Expectations: It’s important to set goals based on your current capabilities and priorities.
Flexibility: Goals should have some padding in their timelines so that you can adapt to accommodate health changes or setbacks without feeling discouraged or stressed.
Small Steps: Break down your goals into manageable steps; don’t be afraid to delegate, ask for help, or remove tasks as necessary. The saying 'It's the journey, not the destination' may be cliché, but it’s true. Remember to celebrate each accomplishment along the way.
Self-Compassion: Practice self-kindness, especially when things aren’t going according to plan. Life isn’t a race—rest when you need to and continue (with adjustments if needed) when you’re ready.
Holistic Well-Being: Use mindfulness and somatic techniques to stay attuned with your physical and emotional needs. Make sure you’re consistent with tuning into your nervous system and supporting it depending on state (fight/flight, freeze etc.). Don’t wait until you’re already burnt out or flaring.
2. Partnering with Your Nervous System
Understanding your limits:
Finding your purpose requires understanding your unique limits—both neurobiological and personal. The window of tolerance is the optimal zone of “arousal” for a person to function in everyday life. When a person is operating within their window, they can effectively manage and cope with their emotions.
Many chronic illnesses develop during or after periods of emotional and physical stress. With fibromyalgia, the nervous system is stuck in the stress response. As a result, people who live with chronic illness may find it difficult to regulate emotions and their window of tolerance may be smaller.
Knowing your window of tolerance across different areas can help you choose goals and activities that align with your capacity:
Physical: How much can your body handle? (e.g., lifting weight, endurance)
Cognitive: How long can you focus on a task before mental fatigue sets in?
Energetic: How long can you work productively before you need rest??
Psychological: How much stress can you handle without becoming overwhelmed?
Emotional: How long can you manage conflict or challenging situations before becoming reactive?
These limitations are shaped by childhood, past experiences, and life circumstances. Meeting ourselves where we are and gradually pushing beyond our comfort zones to set bigger goals will have the best long-term results.
Improving Vagal Tone
The vagus nerve is a series of nerve connections that start at the base of the brain stem, branching through the lungs and ending in the gut. It’s the epicenter of our autonomic nervous system and the key to our emotional health.
Vagal tone is the activity of the vagus nerve and provides clues to an individual’s susceptibility to stress. High vagal tone has been linked to more efficient autonomic regulatory activity and resilience with managing physiological and environmental challenges. While having low vagal tone usually indicates an individual is more vulnerable to stress.
The vagus nerve helps regulate our heart rate- when we inhale, our heart beats faster, letting in mobilizing energy (like releasing the brake of a bike). When we breathe out, our heart beats slower, like reengaging the bike brake. Mobilizing energy propels us, helping us focus and concentrate. But it needs to be controlled, similar to gently applying the bike brakes.
A flexible nervous system can smoothly transition between different states, which is key for optimal performance. After chronic stress or illness, we may experience low vagal tone—like a bike’s brakes being disengaged—which can lead to overstimulation.
The aim should be to engage in challenges that bring in some mobilizing energy while carefully managing this energy to avoid triggering a fight or flight response. Your goal(s) should be something that is challenging, and requires focus, but is within your limitations so your nervous system won't get overwhelmed. For example, learning a new language requires focus, discipline and continuous learning, but you can adjust the hours you study and key milestones to ensure you’re not pushing yourself beyond your limits.
Tip: Incorporate tools and techniques for stress management and relaxation, such as breathwork, guided meditation, tapping, mindful walking, and shaking (discharging energy). Different tools work for different people and situations. We’ll explore some of these techniques in more detail in future posts.
3. Pacing and Adapting
When you have limited energy, where you allocate your time is critical. Pacing involves spacing your activities throughout the day so that you won't exacerbate pain or fatigue. It's a process of learning to effectively manage your activity while accounting for (fluctuating) energy levels and symptoms. As we build tolerance and increase our capacity, we can slowly expand our activities and take on bigger challenges.
Below are some tips for pacing:
It can be helpful to track your current daily activities (cooking, laundry etc.) to get a sense of the energy required and what you might be able to cut out or modify.
Be mindful about scheduling rest days in advance to ensure you don’t burn yourself out or flare. Proactively schedule rest days on your calendar, and treat them as seriously as you do other meetings and commitments.
Now that you understand how much energy you allocate to your daily activities and have accounted for rest, you'll have a clearer idea of the time available to pursue your goals and hobbies. Continuing with the language learning example, even doing 10 minutes of Duolingo a day (perhaps from bed) is a meaningful first step.
Start with less difficult or strenuous tasks that still contribute towards your goal. This will be less stressful for your nervous system and will allow you to achieve some confidence boosting wins.
4. Surrounding Yourself with Supportive People
Co-regulation is the process by which individuals help each other regulate their emotional and physiological states. Supportive relationships can enhance our resilience and coping strategies, enabling us to manage stress more effectively. On the other hand, lacking a solid support network can lead to increased dysregulation, making symptoms harder to manage and goal-achieving more difficult.
None of us can succeed entirely on our own; we all need support and encouragement. In fact, we often achieve more and go further in the company of others. A coach can be a valuable part of your support network, helping bridge the gap between what you want to achieve and what you’re currently doing. Curious about 1:1 coaching through a gentle goal-setting approach? Book a complimentary discovery call here.
Also, if you’re looking for community support as you work towards your goals, you might be interested in joining my support group ‘Goal Getters: Thriving with Fibromyalgia & Chronic Illness’.
Meetings will be every Tuesday at 5:30pm EST through Innovia Behaviorial Health.
Innovia offers a wide range of support groups for adults and kids seven days a week that members can also join.
Regular memberships are $79 USD per month AND each membership includes a free one to give to a family member or friend.
Additionally, you can use the promotional code CO20 for 20% off
I’m offering 5 free passes to my support group on a first-come, first-served basis. If you're interested, email me at hello@caitlinoliver.com.
Conclusion:
Whether it’s a passion project, personal/professional goal, or simply a hobby that brings you joy, having a purpose provides us an outlet for reclaiming our identities beyond chronic illness.
Setting gentle goals, understanding your limits, supporting your nervous system, and pacing yourself, can ensure you’re effectively balancing your aspirations and well-being. Remember, purpose isn’t about doing more—it’s about doing what truly matters to you.
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