The Trauma of Chronic Illness

Emma’s Story

Emma has lived with Mast Cell Activation Syndrome (MCAS) for years — a chronic condition that makes her body react unpredictably to everyday triggers. For a long time, she didn’t have a diagnosis, and she spent years being told her symptoms were “in her head.”

In the sections that follow, we’ll walk through how chronic illness like MCAS impacts every part of life, from the emotional and social strain to the financial and physical toll. Emma’s story isn’t just about symptoms. It’s about what happens when your body becomes unpredictable, and your life starts to shrink around it.

Impact of Chronic Illness on Emma’s Life

Because MCAS is so unpredictable, Emma never really knows what kind of day she’s going to have. Some days, she feels almost normal, and that’s what makes it so hard. On those days, she tries to live like everyone else: to say yes to plans, to go out, to keep up with work. But the truth is, her body doesn’t always cooperate.

That unpredictability is the first thing that changes her world. She starts to avoid social events, not because she doesn’t want to go, but because she can’t risk having a reaction in public. Even leaving the house becomes a calculated decision, because she never knows what might trigger a flare-up. This avoidance isn’t just about being cautious; it’s about protecting herself from humiliation, pain, and the fear of being stuck somewhere without an escape.

And that fear becomes a constant companion. Emma experiences anxiety not just about her health, but about when her body might betray her — at work, at a family gathering, or in the middle of a night out. She’s always listening for warning signs, always scanning for exits, always bracing for the next flare. That kind of vigilance doesn’t just exhaust her physically; it wears on her emotionally too.

Over time, the energy drain becomes overwhelming. Emma often describes her fatigue as if her blood has been replaced with lead. Even small tasks feel heavy, and her brain fog makes it difficult to focus. The simplest things — showering, cooking, getting dressed — can feel like major achievements. When you’re living like this, it’s not just tiring, it changes how you see yourself.

And then comes the grief. Emma mourns the life she used to have and the life she can no longer live. She grieves the spontaneity, the freedom, the future she imagined. She grieves the version of herself who could work full-time without needing constant rest. It’s a grief that doesn’t always have a clear endpoint, because her illness isn’t a one-time loss, it’s an ongoing reality.

On top of all that, there’s the emotional weight of guilt, shame, frustration, and anger. Emma feels angry at her body for letting her down. She feels guilty for cancelling plans, for needing rest, for not being the reliable friend or colleague she wants to be. She feels ashamed when her symptoms flare in public, when people don’t understand what she’s going through, or when she’s told she’s “overreacting.”

And then there’s the medical journey — the part that many people don’t see. Emma spent ten years fighting for a diagnosis, hearing doctors dismiss her symptoms as “in her head” or “attention-seeking.” She knew something was wrong, but she was met with disbelief and gaslighting. That kind of dismissal isn’t just frustrating, it’s traumatic. It makes you question your own reality.

When she finally received a diagnosis, it didn’t end the fear. It only changed its shape. Now she has medical appointments, tests, needles, IVs, and hospital stays, experiences that can feel terrifying and invasive. Each medical visit is a reminder that her body is not safe. That kind of repeated medical trauma adds another layer to the emotional weight she carries.

Her work life also suffers. She loses days, her performance dips, and her motivation plummets, not because she lacks effort, but because her body is demanding more than she can give. The reality is, doing the bare minimum isn’t “lazy”; it’s a survival strategy. But she still feels the pressure to keep up, and the pressure only increases when her illness affects her ability to work consistently.

And the financial impact is brutal. Medical bills, medication costs, specialist appointments - they add up quickly. But she can’t simply work more to cover them, because her illness limits her ability to work. So she’s trapped in a vicious cycle: she needs to work to pay for her care, but she can’t work because she’s too sick. The stress of that reality is exhausting in itself.

Her world becomes smaller and smaller. She starts to plan everything carefully — every outing, every meal, every time she leaves the house. Her friends and family become frustrated when she can’t be spontaneous or flexible. She’s forced to prioritise survival over social life, and that isolation can feel devastating.

Emma’s life becomes limited in ways that go beyond “missing out.” Exercise can trigger a flare. Sometimes even eating can set her off. Her body is unpredictable, and her options shrink. That’s not just FOMO — it’s a loss of freedom, of identity, of belonging.

She doesn’t have the same number of hours in the day as an able-bodied person. She doesn’t have the same energy reserves. Her quality of life drops, not because she’s weak, but because she’s living in a body that is constantly under attack.

Why Chronic Illness Can Be Traumatic

Emma’s story shows something that many people with chronic illness know intimately: trauma isn’t always a single event. Sometimes, trauma is the slow accumulation of experiences that repeatedly tell your nervous system that you are unsafe in your own body.

When illness becomes a daily reality, your body begins to expect pain, unpredictability, and fear. That constant vigilance, always bracing for the next flare-up, is a trauma response. Over time, your nervous system can become stuck in a state of heightened alert, which is why anxiety and hypervigilance are so common for people with chronic illness.

Then there’s the repeated experience of being dismissed, gaslit, or not believed. For Emma, the years of hearing “it’s in your head” or “you’re overreacting” created a deep sense of invalidation. When medical professionals dismiss you, it doesn’t just feel insulting; it can feel like your reality is being erased. That kind of experience can create lasting emotional wounds.

Medical trauma is another major factor. Needles, IVs, hospital stays, and invasive tests can be terrifying, especially when you don’t know what will happen next. Each procedure can trigger the body’s survival response, and over time, those responses can become deeply ingrained. The hospital becomes associated with fear, pain, and helplessness, and that fear doesn’t always disappear when you leave.

Chronic illness also affects your sense of identity. Emma mourns the life she used to have, the person she was before illness. When your body no longer matches your sense of self, it can feel like grief without closure. You’re grieving a life that might never return, and that grief can become a persistent, painful presence.

Finally, chronic illness disrupts your sense of control. When your body is unpredictable, you’re constantly adapting, adjusting, and sacrificing. You might feel like you’re living in a world where you’re always behind, always compensating, always trying to make up for what you can’t do. That ongoing loss of control can create a deep sense of helplessness, and helplessness is one of the core ingredients of trauma.

This is why chronic illness can be traumatic even when it isn’t caused by a single dramatic event. It’s the ongoing pattern of fear, invalidation, loss, and survival. And it can leave you feeling exhausted, overwhelmed, and emotionally numb, even when your mind is screaming for relief.

Spoon Theory: A Simple Way to Understand Chronic Illness

Emma’s life became a constant exercise in resource management, and that’s exactly what Spoon Theory helps explain.

Spoon Theory was created by Christine Miserandino, who lives with lupus. She used spoons in a café to explain to a friend what it feels like to live with a chronic illness. Each spoon represented a unit of energy.

The idea is simple: a person without chronic illness might start the day with dozens of spoons — sometimes it feels like unlimited energy. They can run errands, go to work, meet friends, and still have energy left over.

For someone with a chronic illness, the day starts with a very limited number of spoons. Every activity costs spoons, even the smallest ones. Showering might cost two spoons, walking the dog five, and making dinner three. And when the spoons are gone, that’s it. You can’t do more without risking a flare-up or severe exhaustion.

For Emma, Spoon Theory became a way to make sense of her life. It gave her a language to explain why she couldn’t “just push through.” It helped her recognise that fatigue wasn’t laziness — it was a limited resource. It helped her ask the question: What is truly urgent today? What can wait?

Spoon Theory doesn’t magically give you more energy, but it helps you spend the energy you do have intentionally. And that shift matters. It’s a way of reclaiming control in a life that often feels uncontrollable.

Art Therapy for Chronic Illness: Creative Support That Fits Your Energy

Art therapy can be a powerful tool for people with chronic illness, but it’s important to acknowledge something upfront: it still takes energy.

For someone like Emma, who has limited spoons, art therapy isn’t about doing complex projects or “being creative” in a way that feels exhausting. It’s about finding ways to use art that fit her energy level and support her nervous system.

A good art therapist will work with you to find low-energy exercises that still offer meaning and support. For example, you might:

• Look through images (magazines, online, printed photos) and select ones that resonate. Ask yourself why you connect with them. What do they reflect about your inner experience?

• Take a line for a walk on the page, or push a stone across paper, with no pressure to create something “good.” It’s about movement, sensation, and presence — not performance.

These kinds of exercises can help you connect with your body in a gentle way, release emotional energy, and express what words can’t always capture.

Art therapy can also be a way to externalise feelings of grief, frustration, and anger without having to “explain” them. It can be a way to hold your experience visually, in a way that feels safe and contained.

A Note on Support and Healing

Living with chronic illness can be isolating, exhausting, and deeply unfair. It can also be a journey of learning how to live with your body in a way that honours your limits without erasing your needs.

The point of this blog isn’t to tell you how to live your life; it’s to remind you that your experience is real, valid, and deserving of support. You don’t have to “push through.” You don’t have to perform strength. You don’t have to prove your pain to anyone.

If you’re living with chronic illness, you deserve a therapist who understands the complexity of your experience — not just the symptoms, but the emotional, social, and financial impact too.