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Just call me Ms Diagnosed

Agonising pain and poor health? It's all in your head!

Stress, anxiety, unhappy with your job or relationship, diet, exercise; you're too fat/thin/average...

If you're a person who lives with any type of pain condition, I am sure you can relate to the concept of visiting a doctor and having all of your symptoms blamed on your mental state.

"It's all in your head!" they say. Or, if they aren't so bold as to spell it out, it's more passive, like, "Perhaps you need to talk to a counsellor, or quit your job, or end your relationship."

I can't tell you how many times I shifted my life around after being told the physical pain I was in was mental illness, and that if I just moved house/got a new job/stopped seeing Justin/David/Paul I would be right as rain.

Pain is a state of mind, or is it?

I've lived in 32 houses, had countless relationships and I am embarrassed to tell you how many jobs I quit in the pursuit of happiness and wellbeing.

When my pain became unmanageable, I was young and trying to work out what was wrong with me on my own.

Having lived independently since I was a teenager, I was fending for myself and trusting that my GPs were the fount of all knowledge.

At this point, I will say that it's impossible for doctors to know everything and I say with absolute respect that I think their job is the hardest, especially GPs because they have 15 minutes to diagnose you with anything from warts to worms, diabetes to diarrhoea, mumps to menopause and that's hard, especially if you don't know how to describe your symptoms or where your pain is, because it feels like everything hurts.

I do have a healthy dose of anxiety, depression and low mood, but I was asking GPs for help with physical symptoms, the majority of which was pain.

But I didn't have the confidence, language or knowledge to argue with doctors, and instead kept working on trying to fix a mind that was apparently making my body hurt.

"Chronic fatigue, irritable bowel syndrome, viral meningitis, potential cancer, back pain, maybe you just need to poo?"

I was finally diagnosed with endometriosis at 36 years old and it was such a 'Eureka!' moment - it solved so many mysteries: the pain, the lethargy, the low mood, just to name a few.

But these are also all of the things I was told to focus on fixing for the better part of 20 years until I was finally diagnosed with endometriosis, because these can also be symptoms of depression and anxiety.

But crippling pain, cramping, spasms and aches that interrupt a person's quality of life are not normally a side effect of depression and, no matter how often I tried to tell GPs this is what was my body was doing, they all blamed my head instead.

"Sounds like you just need a holiday", "I think we might need a bit of Zoloft", "I reckon we can safely put all this down to panic attacks," they would say.

Depression, anxiety, bipolar, GAD, PTSD, stress, worry? job satisfaction, bored?... These are all the mental health diagnoses I had when I would present with pain symptoms.

Chronic fatigue, irritable bowel syndrome, viral meningitis, potential cancer, back pain, maybe you just need to poo? and more.

Just call me Ms Diagnosed!

I know I'm not alone and there are many of you who will share similar stories of being told your pain is anywhere but your uterus.

My misdiagnosis greatest hits collection would be familiar to most of you, if not identical and it's pretty frustrating, to say the least.

My diagnosis came after an ectopic pregnancy; not straight away, mind you; I had to continue asking the same specialist for help every three months for an entire year until he agreed to do a diagnostic laparoscopy, which revealed stage 4 endo.

He told me I was grieving the pregnancy loss (I was), that I was stressed (I mean, yeah kinda, but that couldn't be causing this level pain), and that I was healing from the surgery (yeah, it was caesarian surgery to remove a corneal ectopic pregnancy but come on, after a year? Seriously?).

And look, I'll admit, I was mad. Real mad. Relieved that I finally had a diagnosis, but I was PISSED OFF.

"If I spent most of my life trying to heal a head that wasn't sick, how do I now spend the rest of my life forgiving myself for the pressure I put myself under?"

It meant I had spent the majority of my life trying to find strategies to manage a mental illness that was apparently causing severe and debilitating pain.

To find out that I had a severe and debilitating pain condition was validating. To find out it is incurable was devastating. To realise I had been living my life thinking my head was creating this pain and I couldn't stop it, was hard to reconcile.

I couldn't help but wonder, 'if I spent most of my life trying to heal a head that wasn't sick, how do I now spend the rest of my life forgiving myself for the pressure I put myself under?'

Coming to terms with a chronic, incurable pain condition

I needed to be forgiven for punishing myself for years and years, frustrated with myself for not being able to heal my stupid head that was causing the pain (because it wasn't).

I had tried everything: meditation, slow breathing, smoking, exercise, laying low, keeping busy, anti-depressants, not using anti-depressants, contraceptive pills, no contraceptive pill, reading, dating, celibacy, drinking and, probably more drinking.

Finally I had a physical diagnosis, but, seven years later, I am still unlearning all of the behaviours and responses I learned during The Misdiagnosis Years.

Things like: not going to the doctor if something is wrong (including my first ectopic pregnancy that was rotting my uterus for nine weeks before I asked for help because I thought a doctor would just roll their eyes at me), pushing through the pain and causing more pain because I'd be a drama queen if I stopped doing what I was doing due to brain strain, and scoffing at others in pain because it must all be in their heads too...

There's a lot of stuff that I am having to sort through now: a lot of trauma and mindset that needs altering, a lot of learned responses that need unlearning, a seriously injured self esteem that needs boosting, and an angry soul that needs forgiving.

Be kind to yourself, be strong and be aware.

If I had my time again, I would have been brave and stood my ground in my 15 minute consultation.

I would have accepted help for mental health (because that's crucial), but asked for more investigation into my physical symptoms.

Now I'm part of an awesome online endo community. I advocate for people in pain. I attend appointments with people if they need, I'll help them put together their list of questions and demands, and I try to empower them to get to know their own bodies so they can ask for the right kind of help, because I didn't.

Because your appointment is a 15 minute consultation for a busy GP, but it could mean the next 15 years without answers for you.

I have a fantastic team of doctors around me now and I know so much more about my condition, but it took a fire in my belly and an anger at 'The System' to get there.

But when I was younger, I just trusted everyone knew more than I did about my own body and let myself be guided by them, even though I knew deep down it wasn't right.

Please get to know your own body, please listen to it and listen to yourself. And most importantly trust yourself. You know what you are feeling and it's valid, real and important.

I was Ms Diagnosed for many years, but now you can call me M. Powered.

Libby Trainor Parker

Photo by Nat Rogers

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