Becoming Your Own Advocate

Fighting for continuity of care.

Becoming Your Own Best Friend

When I was discharged from hospital after my stroke, I was given what I can only describe as a binder full of instructions, contact numbers, and leaflets. The NHS had done what it was designed to do… save my life. And for that, I will always be grateful. They kept me alive when my body tried to shut down. But then what?

Once the immediate medical crisis was over, I found myself deposited back into the world with a list of follow-up appointments and the vague expectation that I’d just get on with it. And that’s where the system ends.

The system hadn’t failed me. It just didn’t know what to do with me next.

Doctors were often surprised when they saw that I could understand what they were saying. That should have been a clue. I asked questions. I showed up with research. I didn’t seem like the “typical patient” because I looked “well.”

Which, ironically, seemed to disqualify me from deeper attention.

What I quickly realised was that no one was going to project-manage this for me.

Becoming a Project Manager

I became my own case manager, patient advocate, administrator, and translator. I spent hours (literal hours) on the phone with the insurance company trying to find a private neurologist who had an opening before 2024. I sat in sterile waiting rooms, holding referral forms and copies of test results, only to be asked to tell my story again.

And again.

And again.

Each specialist had their own silo: vascular surgeon, neuropsychologist, therapist, audiologist, cognitive tester, and optometrist. None of them connected. None of them talked. I was the only connector. The system had no through-line, and so I became that through-line. Just like a project on ‘Grand Designs’ someone had to bring all these ‘contractors’ together, someone had to project manage the rebuild of my life. And that someone had to be me.

Becoming a Storyteller

Here’s the thing no one tells you. You can’t advocate for yourself unless you’re willing to keep telling your story.

It wasn’t until I attended a ‘Life After Stroke’ conference that something clicked. That was the first time I met someone who had experienced something like I had. Someone who didn’t fit the “typical” stereotype. Someone who understood without needing the whole backstory.

It was then I realised: you can’t move forward until you’ve been heard. And you can’t be heard unless you speak up. Even when it feels ungrateful (yes, they saved my life, but no, I’m not healed) or exhausting (do I have to tell it again?), or painful (when can I let this go?).

Becoming your own Advocate

I didn’t set out to become a patient advocate. I just didn’t want to disappear. I didn’t want to be “fine” on paper and forgotten in reality. So I started pushing back. I started keeping notes. I started to be someone who refused to be brushed aside because my symptoms didn’t shout loud enough. And little by little, things started to shift.

What I Wish I’d Been Told

I wish someone had said:

• “It’s normal to feel lost after discharge.”

  
  

• “You may have to fight for continuity of care.”

  
  

• “You’ll need to repeat your story more times than you think is fair but each time helps you claim it.”

  
  

• “It’s okay to be angry. Use it.”

  
  

• “Being your own advocate isn’t a burden. It’s a superpower and one you’ll use for life.”

  
  

And, let me be clear with you, I’m still working through this. Still translating medical jargon and occasionally overwhelmed. But I’m not waiting for someone to rescue me anymore.

Instead, I’m taking action. Because surviving a stroke wasn’t the end of the story. Instead, learning how to speak up was the beginning of a new one.