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How to Be Your Own Best Advocate When You’re Living with a Chronic Illness

Living Well

May 13, 2021

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by Michael Waldon, LMSW


Medically Reviewed by:

Tiffany Taft, PsyD


by Michael Waldon, LMSW


Medically Reviewed by:

Tiffany Taft, PsyD


Good self-advocacy in medical settings requires a complicated balance of confidence and humility.

Can I be honest with you? I don’t always like my doctors.

It can be difficult to admit that.

The white lab coat, the bright office full of expensive equipment, and the many, many years of schooling to earn a prestigious degree all loom in my mind when I meet a new doctor.

I see these people through the aura of authority that they cultivated over years of education and practice. Even if I feel uncomfortable with my treatment, it can be hard to give myself permission to look past that glow.

Combine this with whatever powerful emotions I might have about my appointment — anxiety, fear, hopefulness — and I can become disoriented. I often feel small and uncertain about what I need or want in relation to the health concerns that brought me in.

To be fair, it’s not just the doctors. I also don’t always like my treatments.

Have you ever been prescribed a medication, maybe for pain management or to control symptoms, that you felt ambivalent about?

Maybe you’re concerned about possible side effects. Maybe you heard of another option, but it’s not available because your insurance won’t cover it.

Or how about undergoing a new procedure? In non-emergency situations, for exploratory, preventative, or treatment reasons, the choice to put on the hospital gown can be a hard one, even if you know it’s for your long-term benefit.

Healthcare choices often involve trade-offs. There are risks, benefits, potential side effects, and alternative care options to consider.

Ideally, your doctor should be a compassionate and knowledgeable guide through these tough decisions. Many are. But others don’t always have the time or training to do this in the best way possible.

What’s more: At a personal level, we might not always connect well with our doctors. This isn’t necessarily their fault. Underneath all that glow, they’re human, too.

It’s not wrong to see your doctors as authorities. They’ve earned their credentials through years of study that you and I haven’t necessarily done, and they’ve devoted their lives to caring for others.

We come to them for their vast knowledge in medicine and physiology.

Still, as patients, we have our own forms of knowledge and authority that are grounded in the lived experience of our bodies, our histories, and our hopes for the future.

We know best what pain we feel, what suffering we’ve lived with, and what we want — or can tolerate — for our futures.

Chronic pain and illness will undoubtedly change things in ways that are out of our control, but we can still have some decisive power in our health choices.

Sometimes, we have to advocate for ourselves to be able to access that power.

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4 tips for advocating for yourself

For me, I find that good self-advocacy in medical settings requires a complicated balance of confidence and humility: the confidence to understand and embrace the health choices I make and the humility to realize that I’m not an expert in modern medicine — even if I’m an expert in my own needs.

It doesn’t always go like this, but, in the best of scenarios, I want to:

  • feel comfortable and confident discussing treatment options with my doctor
  • understand, to the best of my ability, the available choices and any existing barriers or possible negative impacts
  • make an informed choice that aligns with my preferences and the reality of my health circumstances

Here are four tips I’ve learned that may help you feel more empowered in the process.

Learn more

This is definitely a “knowledge is power” situation.

Improve your understanding of your condition and the available treatments by consulting reliable sources.

Websites like Healthline are a great place to start, but also try looking for organizations and resources that are nationally funded or tied to reputable research institutions.

Use this information to ask questions and make strong choices.

Find doctors who believe in collaboration

Your relationship with your doctor should be collaborative, rather than hierarchical.

To be part of this shared-decision making, seek out doctors who will, within reason and the time constraints of their practice, engage your questions and your right to self-determination.

This is especially important, and often especially challenging, for patients who are Black, Indigenous, or People of Color (BIPOC) with histories of oppression and marginalization in their communities.

Research has shown that racial and ethnic disparities between patient and physician can affect quality of communication, with some evidence that unconscious bias on the part of the physician may be a contributing factor.

Medical and communications research has proposed ways that professionals can overcome this gap through good communication practices that focus on patient empowerment.

Get some emotional support

Medical concerns are scary. Chronic pain and chronic illness are anxiety provoking and distracting. There’s no way around that.

This can make it hard to focus and make clear decisions in medical settings.

That may be particularly true if you’re a person living with a history of trauma or experiences of marginalization by authority figures.

Your discomfort here is like an alarm bell, letting you know you could be in danger. These fears may be realistic or unrealistic, but they’ll make it difficult to be present either way.

Partners, friends, and family members can often help you process and untangle your fears and anxieties.

Sometimes, it may feel like you’re leaning too hard on your loved ones — or that they aren’t able to support you in the way you need. In this case, support groups, online communities, or even acquaintances or co-workers with similar experiences can be your most trusted allies.

A good therapist can also help.

Balance your feelings with your reality

While you’re the authority on your own experiences and feelings, sometimes these can be misleading.

To help balance your feelings with your physical reality, find a way to keep track of your symptoms and interventions in real time by using a measurement that’s as objective as you can achieve.

Memory can be tricky, and our emotions can have a big impact on how we experience our symptoms.

For chronic pain, try building a daily log that charts your pain — morning, afternoon, and evening — on a scale of 1 to 10. List any new treatments or other interventions you tried that day.

Even if you have trouble with this in the moment, looking back at your log can help you judge whether that new regimen of medication, morning yoga, or turmeric tea had any impact over the course of the week.

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The bottom line

Health choices usually involve trade-offs, but we can participate fully in the choices we make. Don’t be afraid to ask questions and make your own decisions.

Article originally appeared on May 13, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on May 11, 2021.

Medically reviewed on May 13, 2021

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About the author

Michael Waldon, LMSW

Michael Waldon, LMSW is a psychotherapist, writer, and clinical social worker based in New York and California. He is trained in relational, psychodynamic, and somatic psychotherapies. Michael provides individual therapy to clients based in New York and coaching services to clients all over the United States. You can learn more through his website or at Tapestry Psychotherapy, where he maintains a practice specializing in anti-oppressive and integrative approaches to the treatment of trauma.

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