A thread about digestive issues in young female patients and how quick doctors/society are to label them mental health issues.

I know because I was one of them.

via @BBCNews https://www.bbc.co.uk/news/stories-56688582

Digestive symptoms were the first clue I had #EhlersDanlos.

No one made the link.

Because if you're not extremely bendy and dislocate a lot many doctors will rule out #EDS (if they've ever heard about it - big if).

When I started changing my diet to try and manage my symptoms (with the support of my GP) my gastroenterologists made fun of me.

One even pointed a finger at his head when he saw my mum (they worked in the same hospital) to indicate that he thought it was all in my head.

I didn't have a history of anorexia nervosa, but when I started losing weight - which we later found was linked to my EDS related digestive issues - they thought it validated their point.

No one tried to investigate what was going on

In one of my jobs rumours of anorexia spread just because I was losing weight.

I was monitoring this privately with my GP, but the rumour spread so fast that the CEO started planning staging an intervention.

I didn't have any history of anorexia so that's probably why I didn't end up like Loretta.

But this is extremely worrying.

Once I had an EDS diagnosis I was properly investigated and we found clear explanations for my digestive symptoms.

I was congratulated by my EDS doctors for adapting my diet as it helped me manage symptoms I didn't have a name for.

But this is a cautionary tale for all doctors out there.

If you have very few or no visible symptoms of illness - that was my case - and are a young woman losing weight and having unusual reactions to food i.e. no typical allergies then the chances you'll end up being labelled anorexic are high.

This is dangerous as it affect people's mental health, but also means patients are not properly investigated.

Symptoms are overlooked, and everyone knows being diagnosed early helps symptoms management.

Many of us were diagnosed too late because of that label.

People literally lose their lives.

Loretta tried to kill herself several times.

Again this was interpreted as a sign of her anorexia.

But the gaslighting she was submitted to was because of the hopelessness she felt at not having any treatment for her pain.

The first GP I saw when I moved to London refused to refer me to the neuro-gastroenterologist I was meant to see.

She said "You're young and pretty. Just get on with her life."

Everyone around me started advising me to go to medical appointments looking like a mess.

And you've read @ludawinthesky's story you'll know how much looking pretty and young means your health problems are likely to be labelled "mental breakdown" https://www.bbc.co.uk/news/disability-56187965

This is the reality millions of young women have to deal with.

This destroys lives.

People have killed themselves.

Doctors and society at large must stop jumping on the mental health bandwagon when they see a young woman in pain.

You can be young and ill.

You can be young and in pain.

It doesn't automatically mean this is linked to a mental health problem.

This is a vicious circle because those awful experiences of being dismissed - or even sanctioned in Loretta's case - creates mental health problems.

And then doctors use that against their patients.

They were right from day one, weren't they?

Mental illnesses are real illnesses. People need to get the help and support they need.

But using that label to dismiss young female patients' complains is dangerous on so many levels.

We end up hoping to find one doctor who will look beyond that label.

Some of us never do.

Some of us remain sanctioned.

Lost without answers.

Losing jobs, friends, everything.

This is a human tragedy that doctors allow by going for the simple answers.

This tendency to blame symptoms that can be immediately explained as mental health problems has to stop.

If you are in that situation please don't give up.

Yes, you may or may not have mental health problems, but there are many things that could explain your symptoms.

If anyone wants to DM me my mail box is open.

I went through this alone with no support and it almost broke me.

I once called a relative crying on the phone explaining no one was listening to me, and that I had no explanation for my digestive symptoms.

And all she said was "See, you're mentally ill."

Don't let anyone - doctors, family, friends - dismiss you.

Many times I was temped to go for the "Yes, after all it might just all be in my head."

It wasn't. I had to meet that one doctor who said "This sounds like EDS, let's do the test for X and Y".

Then we got answers.

Where would I be without that one doctor? I don't know.

This was a difficult thread to write, but I hope it can give hope to someone out there who just feel like their symptoms are just too weird, or have been dismissed so many times by doctors that they've given up on getting answers.

You're not alone in this