We Know Our Bodies - and We Deserve to Be Heard

Hi everyone, I’m Jodie, you’ll catch me in Kerry’s classes, usually taking it easy because someone took my energy a few years ago and hasn’t returned it yet!

Image of Jodie taking a selfie, smiling at the camera. She is swimming in a lake. Her dog and son are in the background

I’m a music and sea loving single mum to a now 16-year-old neurodivergent lad and dedicated dog-mum to a not-so-clever border collie. I also have hypermobile Ehlers Danlos Syndrome and a cartload of co-morbidities it brings, plus living with mental illness by way of C-PTSD and Borderline Personality Disorder - oh yeah, not just a zebra but one with a stigmatised mental health condition… Anyway, enough of me!

Our wonderful Leanne recently shared a post, which I think will resonate with too many of us. She asked us to record short videos about times we’d been dismissed or mistreated by medical professionals. The response was overwhelming, because, sadly, so many of us have a story, usually multiple stories.

Here’s mine, raw and short: earlier this year I had a diagnostic hysteroscopy. I was not offered sedation or adequate pain relief beforehand. During the procedure the pain was so intense I fainted. When I came round the consultant told me to “take a deep breath and carry on, it’s just a little discomfort and you could be discharged if you don’t.” I carried on. I left bleeding heavily, barely able to walk, and went into shock on the way home. I was vomiting and in severe pain for a week and needed a GP check to rule out infection.

Had I known my options in advance I would have held firm and insisted on anaesthesia and I now know NICE guidelines and professional bodies emphasise informed consent and pain-minimising practice for outpatient hysteroscopy.

That experience sits alongside years of small and large hurts: being belittled for needle fears because of hypermobile veins, being told to “lose some weight” when seeking help, being told symptoms were “all in your head,” or hearing clinicians question the validity of a formal diagnosis.

During one exam a physiotherapist repeatedly pushed me past a safe range of movement until my hip started to subluxate, then shrugged it off. These are not isolated incidents; they are part of a pattern: dismissal, minimising, and sometimes open misogyny in healthcare interactions.

This problem is getting more public attention, and that’s a good thing. A new initiative called Jess’s Rule asks GP teams to “reflect, review and rethink” if a patient presents three times with the same or worsening symptoms, and to consider face-to-face assessment, second opinions, or referrals earlier than before. It’s being rolled out to encourage earlier diagnosis and to reduce missed or delayed diagnoses. But WHY has it taken a young woman (most likely more) to lose her life for this to be made legislation?

If you’ve been treated like I was - minimised, gaslit, or ignored - here’s what we can (and should) do:

Speak up and use official channels

• Record what happened, with dates, times, clinician names/roles.

• Raise concerns with the hospital’s Patient Advice and Liaison Service (PALS) or your GP practice manager. Complaints help create change.

• If a response is inadequate, escalate; formal complaints, the local Healthwatch, and if necessary regulatory bodies (e.g., the GMC for doctors).

Prepare and take backup

Don’t go unprepared.

Bring: a short summary of symptoms, a timeline, medication list, copies of letters/tests, and a prepared list of questions. Bring someone with you if it helps - a chaperone or advocate who can take notes and support you. If you’re anxious, say so and insist on pain-management options being discussed. Below is a quick appointment plan you can copy:

Appointment plan:

1. Brief one-line summary of problem and how long it’s lasted.

2. Key symptoms, recent test results or referrals.

3. What I want from this appointment: (exam / tests / referral / pain-management discussion).

4. Questions: “What are my options for pain relief or sedation?”, “If we can’t diagnose today, what are the next steps and timeframe?”, “Can we have a face-to-face exam?”

5. Ask for a chaperone or advocate to attend, and for notes to be put in the record.

If it helps, use ChatGPT or similar tools to format your plan, print it out, and hand it over at the start of the consultation. Never accept a casual dismissal. Ask what the clinician will do next and when you should return if nothing improves.

Join and support campaigns

There are national campaigns and pressure groups working to improve diagnosis, reduce gendered disparities, and promote respectful care.

Add your voice: sign petitions, contact MPs, support patient groups. Collective pressure changes practice.

Finally, and most importantly, our Mobilates community is a safe harbour. Share your story if you can, or just come for practical support, laughter, or to cry.

We know our bodies; we do not deserve to be fobbed off, belittled, or made to feel small. Speak out, keep records, and look after one another.

I have to confess to using Chat GPT (or any other AI platform - yes, I know they’re the devil) to draft all my medical stuff (even PIP), because lets face it, its exhausting and quite often triggering dealing with our own stuff, so I do an info dump and let it do the rest!

We are stronger together and, of course stronger than yesterday xx

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Mobilates CIC provides online and in-person inclusive exercises classes for people in the UK. Classes centre around supporting people with mobility issues, chronic pain, disabilities and long-term health conditions.

www.mobilates.com