The truth to being a human living with pain
Written by Emma Ketley and originally published by Endometriosis WA for Mental Health Week 2020.
*Trigger warning - this blog contains mentions of feeling suicidal*
I’m going to share something with you that not many of us even share with our families and friends. I have endometriosis, and I have previously felt suicidal because of it. From the outside, nothing looked wrong - I had friends, family, a busy career and I have a face that most frequently wears a smile. Yet behind all this, was pain, sleepless nights, brain fog, and lost days alone - crying and wrapped around a heat-pack.
At its worst, I lost about ten days in every month to endometriosis. Ten days where my partner would tell people “I had a cold” because “period pain” didn’t seem to be an acceptable - or accepted - reason to miss social events. Ten days that I tried to struggle through work, using painkillers, deep heat, and stick on heat patches. Days when my former male GP told me that my “period pain” was normal - even though I already had the diagnosis of Endometriosis; but he could give me sleeping tablets for insomnia, antidepressants for the low mood, and perhaps stronger pain killers if I really needed them (“but do you??!”).
Nobody knew or understood the impact that endometriosis was truly having on my life. And I carried on, as many of us with chronic pain do, pretending that everything was okay - hiding my symptoms, minimising them as “feeling a bit off”, and generally trying to be superwoman.
Then my husband and I house sat for a friend. After 3 nights of endo-induced insomnia, I found myself sat alone in my friend’s bath for two hours in magnesium-filled, (-um-) ‘rose-coloured water’, having pain spasms and throwing up; and thought “I cannot live in this pain anymore”. I felt disgusting, unable to move, and scared that the pain was relentless and was only ever to get worse. My mind flashed to my friend’s sharp professional chef knives, and I thought how easy it would be to end the pain.
For me, this moment was a U-turn. A non-negotiable jolt that endo had already taken so much from me, but now it was making me feel suicidal?! How dare it! No way Buster, I want to live - I just want to live without endo!
That moment was a breakthrough, and I am now thankful for it. Hearing my mind snap back that it wanted to live brought me back to myself. I woke my husband up and we went to the Emergency Department where I was kept on painkillers overnight.
In Acceptance Commitment Therapy terms, my observing self [aka ”No way Buster...’] shifted me from “Self as Content’ fused with the idea that I had to quietly suffer endometriosis; to a more empowered “Self as Context” that I was an individual who wanted to live and needed more help to manage a chronic pain health condition.
And here’s another disclosure - I’ve been a Mental Health Therapist and Psychotherapist for nearly two decades.
I have lots of references and client feedback to say I’m a pretty great Therapist actually, but it still took me a personal moment of feeling suicidal to realise how much chronic pain management is a mental health issue as well as a physical one.
I would say that I’m late to the party, but sadly it’s recognised that some pain specialists and GPs clearly still don’t get that chronic pain management requires Physical AND Mental Health care. [See further reading].
When ‘specialists’ don’t get the connection between Physical and Mental Health, we owe it to ourself to recognise it.
To this I say- realise what you are going through is in the context of you managing a health condition- when you already have so many other things to juggle.
Please remember:
It’s understandable for you to feel this way. Amongst other things, Endo can affect relationships, body image, finances, fertility, employment security, and social participation.
Educate friends and family about Endo/Adenomyosis and Mental Health so you have support and understanding around you. Consider becoming a Mental Health First Aider to support others. Post information up on your socials so others can see and learn.
Anxiety and Depression are common experiences with pain conditions. Your GP can give you access to 10* Medicare subsidised Psychological therapy sessions in a calendar year with a GP Mental Health Care Plan. Medicare Telehealth (i.e. online or telephone) sessions to all areas have been extended to March 2021**- so you don’t even have to travel to your appointment.
If you are going into the GP to talk about your physical and mental health (and to get a Mental Health Care Plan for therapy) book a double appointment. You want the GP and yourself to have time for discussion.
Cognitive Behavioural Therapy, and Acceptance Commitment Therapy can support you to manage the thoughts, emotions, and behaviours that can be increasing your distress. If you can’t access a therapist then consider reading self-help books or looking for online courses.
If you need help, get help. There’s no shame in asking for support, you are not meant to do this alone. Use helplines, webchats, and this community: The Endometriosis Perth Sisterhood of Support [EPSS]. Another great resource that I love to refer to when I deliver Community Mental Health First Aid courses is the website/directory ‘Head to Health’.
Ration your spoons/conserve your energy/don’t try to save the world in one day. Avoid the perpetuating cycle of increased exhaustion and reduced mental resilience. This only heightens pain sensations and creates opportunities for negative self-evaluation. EPSS shared a resource by Jason Parry on “Practical Pacing and Fatigue Management” which can be found here.
Alternatively, discuss energy conservation or fatigue management strategies with an Occupational Therapist or Physiotherapist.
Remember – you have a physical pain condition that requires both physical and mental care.
Be kind to yourself.
