According to the CDC, nearly 6 in 10 Americans live with at least one chronic illness. But what exactly defines a chronic illness? It’s a condition that lasts for a year or more, often requiring continuous medical care and sometimes limiting daily activities. Some common examples include diabetes, COPD, arthritis, and Behcet’s disease. For more information, check out the CDC’s overview here.
Living with a chronic illness often means dealing with ongoing symptoms or unpredictable flare-ups. For many, it’s not just about adjusting to the symptoms they face daily, but also learning to cope with the uncertainty that comes with flare-ups. These flare-ups can include things like joint pain, fatigue, headaches, and more, adding an extra layer of challenge to daily life.
The physical toll of chronic illness can be draining on its own, but the stigma that comes with it can be just as exhausting. Many chronic illness symptoms aren’t visible to others, and while loved ones often want to help, they may unintentionally dismiss the experiences of those affected. For people with invisible illnesses, this can lead to feelings of being misunderstood or even accused of overreacting, as if their struggles are imagined or "all in their heads."
How do we set ourselves up for success?
The 4 Ps of energy conservation are extremely important when working with chronic illnesses. The goal of implementing these 4 Ps is to be able to manage expectations of what you’re able to do with the time and energy that you have. The 4 Ps are pacing, prioritizing, positioning and planning.
Planning involves taking a step back and looking at the entire week ahead—considering your tasks, work, events, and everything else on your schedule. It's about assessing how much energy each activity will require. It also means reflecting on the past to evaluate how much energy and rest were needed in previous weeks, so you can plan more effectively. By doing this, the goal is to help individuals structure their week in a way that’s manageable. This also includes having backup plans in place, whether that’s a Plan A, B, or C, so you’re prepared for any unexpected changes.
Pacing refers specifically to knowing your limits. Knowing these limits allows individuals to know how much rest is necessary for the amount of energy being used throughout the week. Do you need to plan things for mornings and evenings to allow for ample rest time in the middle of the day?
Prioritizing refers to managing what NEEDS to be done and what can be put off for later. The important part of this P is giving yourself grace. It is so easy for us to judge ourselves in what we “should” be able to do or maybe what you’re able to do without a flare up. It may even look like grieving what you were once able to do. Part of making this step work best is by knowing your values. What is of priority to you? Do you prioritize cleaning your house or cooking lunch?
Positioning is a more physical step. The physical positioning of an individual’s physical environment. How can you make your physical space work better for you? Does that include putting a pan that you use everyday above the stove instead of under the stove? Do you sit down to take a shower instead of stand? How do we decrease the energy used for every day tasks to be able to save for other things?
Lindsey Voorhees, a licensed occupational therapist, proposes the addition of 2 more Ps. Pause and pivot.
Pause is referring to the rest that happens during pacing. Pausing, the way Voorhees proposes it, includes mindfulness or something that is actually restful. If including pausing just becomes something on the “To Do List” then it loses its power and effectiveness. The power of the pause comes in the rest that it provides.
Pivot takes the plan A, B and C from our planning phase and puts it to action. It may not be the most efficient plan, but allowing yourself the grace to pick a different plan that works best FOR YOU in those moments. What do YOU need.
It's crucial to remember that living with a chronic illness involves not just managing physical symptoms, but also navigating the emotions that come with them. This might include grief over a life once lived or the life they hoped to have, or feelings of anger about their limitations. It could also mean constantly advocating for yourself with medical providers or setting both physical and emotional boundaries with friends and family. These are heavy, important emotional burdens to carry, and while they deserve space and attention, you don’t have to face them alone—and we shouldn’t be expected to.
Community plays a vital role in managing chronic illness. Seek out a support group where you can connect with others who understand your journey. Try doing your physical therapy exercises at the park or finding ways to get outside. It's important to avoid the isolation that often comes with living with a chronic illness—staying connected can make all the difference.
How can you support a loved one with a chronic illness?
Start by respecting their boundaries and being mindful of their physical limitations. Offer to accompany them to doctor’s appointments for added support. Ask them what they need and make sure to validate their experiences. Just being there and showing understanding can make a world of difference.
Resources
If you want to learn more about chronic illnesses check out these resources
The Chronic Illness Therapists Podcast with Destiny Davis LPC CRC
If you are looking for support with your chronic illness, The Couch Therapy would love to help you on your journey.
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