Living with Chronic Illness in a World That Doesn’t Slow Down

Contributed by Alicia Cornwell, LPC-Associate, Supervised by Chelsea Fielder-Jenks, LPC-Supervisor

Ever feel like your body just can’t keep up with the rest of the world’s pace despite how hard you try?

Living with a chronic illness or invisible condition often means carrying a weight that others can’t see. While you might seem “fine” on the outside, the daily reality of managing pain, fatigue, medical appointments, or unpredictable symptoms can take an immense toll on your mental health. If that sounds familiar, you’re not alone.

Living with a chronic illness is complicated. The challenge isn’t limited to the physical — it’s emotional, social, and systemic. It’s the daily balancing act of managing symptoms, uncertainty, and other people’s expectations in a world that wasn’t built for bodies like yours.

If you live with a chronic condition, you’re not alone, and you’re not imagining how hard it can feel.

What People Don’t See Still Exists

Chronic illness refers to long-term health conditions that require ongoing management. Illnesses like autoimmune diseases, chronic pain syndromes, PCOS, Endometriosis, POTS, Ehlers-Danlos Syndrome, Fibromyalgia, Long-Covid, and many more. Many of these are invisible, meaning others can’t easily see the fatigue, pain, or brain fog that define your day. On the surface you might look like a typically healthy individual — but that does not reflect what you’re experiencing internally.

That invisibility comes with a cost. People with hidden illnesses often face disbelief, invalidation, and pressure to “push through.” Not to mention that the process of getting a diagnosis and some answers to the symptoms you're experiencing can be a long process in this healthcare system. The emotional labor of justifying symptoms or trying to appear “okay” can be exhausting on its own. Let alone trying to explain to others what it’s like to constantly negotiate between appearing capable and feeling exhausted.

Recent research suggests that more than three-quarters of adults in the U.S. live with at least one chronic condition (Watson, et al. 2025). Among those, many report that the hardest part isn’t the illness itself but rather navigating the misunderstanding, isolation, and constant adaptation required to live with it.

Our Mind and Body Are Interconnected

Being sick is stressful. When your body is fighting an illness, your nervous system remains on high alert. Pain, inflammation, fatigue, and sleep disruption all contribute to what researchers call allostatic load — the accumulated wear and tear of chronic stress on the body and brain. Think of it as your body’s stress “bank account”. When withdrawals outweigh deposits for too long, both mind and body start to struggle.

Chronic illnesses also differ from typical health struggles in that there is often not a cure. The condition will be chronic and there is not a clear ‘end’ to the pain. This brings up a complicated grief. Grief for your ‘old self’, anxiety and fear for the future, and guilt about needing help. You may find yourself hyper-aware of every symptom or frustrated that you can’t do what used to feel easy. Over time, that constant vigilance can lead to depression, hopelessness, or even thoughts of giving up.

Multiple studies confirm what many already feel: chronic illness significantly increases the risk of anxiety, depression, and suicidal ideation (Akif et al., 2024, Huang et al., 2023). The more invisible the illness, the higher the risk… especially when others dismiss your pain or minimize your limitations.

It's Not You, It’s The System.

Beyond the personal and emotional weight of illness, there’s another layer that adds to the struggle: the system itself. Our healthcare and social systems are not designed for chronicity or complexity. Medical appointments are short, fragmented, and focused on “fixing” what’s wrong, not supporting what’s ongoing. Insurance rarely covers the integrated care that complex illnesses require. And when lab results look “normal,” patients are too often told it’s all in their head.

This kind of medical gaslighting, being disbelieved or dismissed, does real emotional and physical harm. It can lead to delayed diagnoses, untreated symptoms, and deep mistrust in the healthcare system. For people who already live with marginalized identities like queer, trans, disabled, or people of color — these barriers multiply.

So, What Now?

There’s no single roadmap for living with chronic illness, but there are tools and perspectives that can make the load lighter:

Spoon Theory & Energy Budgeting

Christine Miserandino created “Spoon Theory” to help explain the limited energy available to people with chronic illness (Awareness for POTSies, n.d.). Think of your daily energy as a limited number of “spoons.” Every activity whether that be showering, working, eating, socializing, etc. will cost spoons. When you’re out, you’re out. There’s no energy left, and continuing to push through can bring you to a ‘spoon deficit’ that contributes to ongoing difficulty recovering. Tracking and planning your spoons helps you pace yourself and reduce crashes and can help others understand your experiences.

Harm Reduction & Pacing

Instead of “all or nothing,” try “something instead of nothing.” Small, sustainable efforts like stretching for two minutes, texting a friend, count. Success isn’t measured by productivity, but by self-preservation.

Radical Self-Compassion

Say it with me now: “I am not lazy. I am not weak”. You are living in a body that requires extraordinary effort to exist. Offering yourself kindness and grace is not giving up, it's adapting and contributing to resilience.

Mind-Body Connection

Gentle mindfulness, grounding, and somatic awareness can help you reconnect with your body as a partner, not an enemy. Even brief breathing exercises can reduce nervous system overload.

Community & Support

Connecting with others who “get it” is important. Peer and online support groups can provide powerful validation and shared understanding, helping to reduce anxiety and loneliness. In addition to peer spaces, individual and group therapy can offer structured support for exploring these experiences more deeply.

A skilled therapist can help identify patterns, build coping strategies, and create a safe space to process the emotional toll of living with intersecting identities or diagnoses. Group therapy, especially when facilitated by an affirming clinician, also allows people to practice connection and vulnerability in real time, bridging the gap between understanding and healing

The Importance of a Therapist Who Gets It

Not every therapist is equipped to understand the complexities of chronic illness — and that’s okay. But it’s important to find someone who does. A therapist familiar with chronic pain can help you:

Navigate medical trauma and gaslighting
Develop pacing and coping strategies
Rebuild a sense of identity and meaning
Manage grief, anxiety, and frustration
Build advocacy and communication skills with other providers

Therapy doesn’t “cure” illness, but it can create space for healing emotional wounds, building resilience and self-trust, and challenging systems of oppression. It can help you hold both truths at once: this is really hard and you’re still here.

Being chronically ill means living with complexity, both physical and emotional. You deserve care that acknowledges all of it and all of you. Whether that support comes from peers, a therapist, or a compassionate community, connection is the antidote to invisibility.

Living with chronic illness asks more of you than most people will ever understand. And your effort, your existence, and your resilience matter, even (and especially) on the days that feel impossible.

Resources

For further learning and support:

Books

Podcasts

‘It’s OK that you're not OK’ with Megan Devine — Episode title, “Living with Chronic Illness: A Conversation For Everyone with a Body with Sarah Ramey”
My Spoonie Sisters

References

Ahtoy, P. (2024). Behind the hidden struggles linked to invisible disabilities. understanding their impact to increase mental health awareness for Enhanced Professional Care. Ethics, Medicine and Public Health, 32, 101016. https://doi.org/10.1016/j.jemep.2024.101016
Akif, A., Qusar, M. M. A., & Islam, M. (2024). The impact of chronic diseases on mental health: An overview and recommendations for care programs. Current Psychiatry Reports, 26. https://doi.org/10.1007/s11920-024-01510-7
Huang, Y., Loux, T., Huang, X., & Feng, X. (2023). The relationship between chronic diseases and mental health: A cross-sectional study. Mental Health & Prevention, 32, 200307. https://doi.org/10.1016/j.mhp.2023.200307
“Spoon Theory — Awareness for POTSies.” Awareness for POTSies, Retrieved 4 Nov. 2025, https://www.awarenessforpotsies.org/spoon-theory.
Watson, K. B., Wiltz, J. L., Nhim, K., Kaufmann, R. B., Thomas, C. W., & Greenlund, K. J. (2025). Trends in multiple chronic conditions among US adults, by life stage, Behavioral Risk Factor Surveillance System, 2013–2023. Preventing Chronic Disease, 22. https://doi.org/10.5888/pcd22.240539