Why Self-Advocacy is Exhausting When You're Chronically Ill (And How Therapy Can Help)

If you're reading this, chances are you've spent more energy preparing for a doctor's appointment than you did on the actual appointment itself. You've laid awake at night practising what you'll say, worried they won't believe you this time, tracking symptoms obsessively so you have "evidence," and then spent days afterwards recovering from the whole ordeal.

Self-advocacy when you're chronically ill is exhausting on a level that most people don't understand. And unfortunately, if you are a woman, you can often multiply that exhaustion by about a thousand.

Let's talk about why advocating for yourself costs so many spoons and what you can do about it.

What Does Self-Advocacy Actually Cost?

When people think about self-advocacy, they often picture the moment you're sitting in the doctor's room, clearly stating your needs. But that's just the tip of the iceberg. The real energy drain starts weeks before that appointment.

I've had clients come to therapy weeks before a medical appointment already in fight-or-flight mode. They can't regulate. They're anxious they won't be believed (even if they've been believed before) because it feels like it's only a matter of time before their "luck" runs out.

They spend days or weeks preparing. Tracking every symptom. Writing lists. Rehearsing what they'll say. Trying to anticipate every question and have the "right" answer ready.

This doesn’t look like your ‘bog standard’ overthinking, rather it’s a survival mode when you've learned that not being believed has real consequences.

Then there's the actual appointment. The physical energy of getting there when you're already knackered. The emotional labour of staying calm and articulate when you're in pain. The mental gymnastics of trying to be assertive enough to be taken seriously but not so assertive that you're labelled "difficult."

If you're a woman with conditions like endometriosis, adenomyosis, or fibromyalgia (or conditions that disproportionately affect women and are chronically under-researched and dismissed) then you're fighting an uphill battle before you even open your mouth.

And then there's aftermath. Processing what happened. Did they believe you? Did they really listen? Or have I been marked with an X on my file?

Even when appointments go well, there's the emotional comedown. You've been running on adrenaline, and now you're left exhausted. And if they don’t go well, then there’s a whole other level of grief, anger, and depletion.

The Never-Ending Cycle

My clients tell me:

"I'm sick of it."

"I'm fed up."

"It's always up to me."

"It's exhausting."

"It's never-ending."

Because it is all of those things. You're not imagining it. It’s incredibly difficult.

Advocacy

Why Is It So Hard?

Repeated experiences of dismissal leave people feeling like, "What's the point? I'll never be believed." And yet, they find the courage to hope that this time will be different.

Often, it isn't.

That builds up. Each dismissal adds to the last. The anxiety before appointments isn't just about this appointment but about every appointment where you weren't believed, where your pain was minimised, where you were made to feel like you were overreacting.

That's medical trauma. And it's cumulative.

Plus, if you're a woman with chronic illness, your pain is taken less seriously. That's not in your head. That's backed by research, and it's an absolute joke. Women are more likely to be dismissed, more likely to have their symptoms attributed to anxiety or stress, more likely to wait longer for diagnoses. Conditions like endometriosis take an average of 7-8 years to diagnose. Seven. To. Eight. Years.

If you have a condition that doesn't have a clear diagnostic test like fibromyalgia, ME/CFS, long COVID, or you're in a pre-diagnosis state where you know something is wrong but can't get anyone to believe you then you're fighting even harder.

And if you don't have the means to go private, it's so easy to fall through the cracks. (I also recognise that might sound privileged coming from a private therapist). Basic healthcare should be there for everyone, and too often, there's just an absolute lack of humanity in it all.

The system is overwhelmed. Doctors are overworked. But you're the one paying the price for that, and it's not fair.

Then there's watching other people advocate on social media, seeing them confidently demand tests, switch doctors, push back and thinking, "I should be doing more." That comparison knocks your confidence. You start questioning yourself. "Am I not trying hard enough? Am I being too passive? Why can't I do what they're doing?".

But you don't see their behind-the-scenes. You don't see how much energy they're using, or whether they have support you don't have, or whether they're borrowing spoons from tomorrow just to look confident today.

When You Can't Keep Fighting

Sometimes, you have to step back because you have no energy left to fight the fight.

And that's okay.

Stepping back is part of survival. It's recognising that you can't pour from an empty cup.

The hard part is that when you do step back, you're often starting from zero again when you're ready to try again. That means rebuilding your confidence, gathering your energy, and finding the courage to hope again.

That's where therapy can help, by supporting you through that rebuilding without judgment.

The Grief Nobody Talks About

There is always the quiet issue of grief for the time lost to advocacy. Time you could have spent with your kids, pursuing your goals, resting, living your bloody life, instead spent fighting just to be believed about your own body.

The grief of having to fight at all. Of knowing that if you were believed the first time, or the second, or the tenth, you'd have so much more energy for everything else. The unfairness of it all deserves space. You're allowed to be angry about it. You're allowed to grieve it.

How Therapy Can Help

Therapy isn't going to make the system less shit. I can't fix the NHS waiting times or make doctors magically believe you.

But here's what therapy can do:

Validation and Understanding

First and foremost, you're not alone in finding this exhausting. It's not a personal failing that advocacy drains you. It's a completely reasonable response to a system that's failing you.

Therapy gives you space to acknowledge how hard this is without anyone telling you to stay positive or that "at least you have a diagnosis" or whatever other unhelpful s**te people throw at you.

Processing Medical Trauma

We can work through those repeated experiences of dismissal. We can look at how past appointments affect your anxiety about future ones. We can process the grief, the anger, the fear.

Medical trauma is real, and it needs addressing, not just powering through.

Understanding Why It's So Hard

We look at how all your experiences have influenced how you feel about advocating and how it's been received before. We explore the messages you've internalised from an ableist society and a patriarchal medical system. We unpack the comparison trap and the "I should be doing more" thoughts.

Building Confidence (Without Toxic Positivity)

Therapy can help you build confidence to advocate, not in a "just believe in yourself!" way, but in a "let's understand what's getting in your way and work through it" way.

Sometimes that confidence looks like speaking up more firmly or like giving yourself grace when you find it difficult. Both are valid.

Working with Uncomfortable Emotions

A lot of people try to avoid anger because it feels scary or "not productive." But anger can be incredibly useful fuel for advocacy.

We can work on channelling those uncomfortable emotions like anger, frustration, resentment into advocacy rather than turning them inward or avoiding them entirely.

Building Your Support Network

Do you have to advocate alone, or is there emotional and practical support available to you? If not, how can we build that? Sometimes just having someone come to appointments with you to take notes or back you up makes all the difference.

Giving Yourself Permission

Permission to step back when you need to. Permission to find this hard. Permission to be angry about the unfairness of it all. You're not less than for struggling with this. You're human.

To sum it all up…

Self-advocacy when you're chronically ill costs spoons you most often don't have. The anxiety before appointments, the emotional labour during them, the processing afterwards, the constant explaining to everyone around you…t's all exhausting.

And if you're a woman with conditions that are routinely dismissed, you're fighting even harder.

It's okay to find this difficult. It's okay to be angry about having to do it at all. It's okay to need support.

You're not alone in this, even when it feels incredibly lonely. And therapy can give you a space to work through the emotional toll of all of this without judgment.

If this resonates and you're looking for support, reach out. I’m always here if you need me.

Kirsty x