Finding Your Voice in Chronic Illness: The Power of Speaking Up

Living with chronic illness often requires a level of self-advocacy that goes far beyond what most people experience in healthcare. It means repeatedly explaining your condition, asserting your needs, correcting misunderstandings, and sometimes challenging authority. When the stakes are your health, dignity, and quality of life, speaking up for yourself is not optional, it’s essential. And when something goes seriously wrong, making a formal complaint is sometimes the only way to protect yourself and ensure others are held accountable. For people with chronic illness, the importance of speaking up, and making a complaint if necessary, cannot be overstated, yet it's crucial to acknowledge how hard and challenging it can be for many.

The demand for self-advocacy

For individuals with chronic illnesses, voicing their concerns is frequently a regular aspect of medical interactions. Unlike acute conditions (which tend to have clearer timelines, treatment paths, and outcomes) chronic illnesses are long-term, complex, and often invisible. This invisibility can lead to being disbelieved, dismissed, or misunderstood by healthcare professionals. Symptoms may be minimized, test results misinterpreted, or psychological explanations overemphasized in place of physical ones.

In these moments, self-advocacy becomes an act of self-preservation. It involves saying, “No, that’s not what I’m experiencing,” or “I need you to listen,” even when your body and mind are tired and your confidence is worn thin. Speaking up is also about insisting on appropriate care: asking for second opinions, requesting referrals, and reminding providers of your history. This can be exhausting, but it’s often the only way to avoid being overlooked or mismanaged.

The emotional weight of silence

Many people with chronic illness feel pressure to be polite, agreeable, and non-confrontational, especially when their symptoms are chronic but not life-threatening. They worry about being labeled difficult or non-compliant and may fear their concerns will be brushed off if they push too hard. Over time, this leads to internalized doubt and learned helplessness. They begin to question their own judgment and suppress their instincts, even when something feels deeply wrong.

This silence comes at a high cost; needs go unmet, symptoms worsen, harm accumulates, and the person is left carrying not only the burden of illness, but the frustration and guilt of having not spoken up when they needed to. Breaking this pattern by reclaiming your right to name what is happening, and demand better, is often the first step toward healing, both medically and emotionally.

The role of social support

Speaking up for yourself in chronic illness is not always straightforward. It can be especially difficult when you’re already exhausted, in pain, or emotionally drained from long-term struggles. Many people living with chronic illness have experienced repeated dismissal or medical gaslighting, which can erode confidence and make self-advocacy feel risky or pointless. There’s also a social pressure to be grateful for any care received, which can silence those who are unhappy with how they’ve been treated. In these moments, social support becomes crucial. Having trusted friends, family members, or advocates who validate your experience and encourage you to speak up can make a world of difference. They can offer emotional backing, help prepare for appointments, or even accompany you when necessary. Social support not only amplifies your voice, but also reassures you that you’re not alone, and that your needs and boundaries are valid and worth protecting.

When speaking up isn’t enough

There are times when speaking up informally doesn’t lead to change. Perhaps a doctor was dismissive, a nurse was negligent, or a system failed to provide the support it promised. In these cases, making a formal complaint is not about being difficult; it’s about seeking justice and protecting yourself and others.

Filing a complaint can feel intimidating. It involves recounting painful events, revealing your vulnerabilities, and sometimes facing the same system that caused you harm. But it's also a powerful tool. A well-documented complaint becomes part of a formal record. It can lead to reviews, policy changes, apologies, or retraining. At minimum, it says: This happened. This mattered. I will not let it go unnoticed. For people with chronic illness whose experiences are too often ignored or invalidated, this act can be profoundly affirming. It is not just about changing the system; it is about reclaiming your voice.

Why it matters

Speaking up (and making complaints when necessary), are acts of courage in a system that doesn’t always reward them, but they matter because they set boundaries. They prevent further harm. They pave the way for better care not only for yourself, but for others walking the same difficult path.

When you live with chronic illness, you are forced to become your own advocate, educator, and protector. This shouldn’t be the case, but it is the reality for many. Until healthcare systems become more responsive, more empathetic, and more trauma-informed, patient voices must continue to push for change.

Conclusion

Speaking up for yourself when you have a chronic illness is not just a skill, it’s a survival strategy, and when informal efforts fail, making a complaint can be a vital next step. It's not about confrontation or revenge, it is about accountability, safety, and self-respect. It's about having a sense of self-worth. Every time you speak, and every time you challenge injustice, you reaffirm that your health, your experience, and your life matter. You matter! And that is never something to stay silent about.

If this is something you’ve been affected by, please leave a comment below. If there’s something important you’d like to add, please do so. I'd love to hear from you.

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Dr. Ingela Thuné-Boyle is a licensed Practitioner Health Psychologist and a Doctor in Behavioural Medicine who specializes in stress and loss, especially in improving the quality of life of people struggling with long-term health problems, chronic pain and trauma. She runs a private online (telehealth) practice at www.ingelathuneboyle.com.

Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.