Last week I had the pleasure of being part of a presentation and discussion on the psychological impact of diagnosis. It’s a topic close to my heart, having experienced all manner of psychological fallout to my own misdiagnosis, eventual diagnosis and horrendous legacy of both, from stress and anxiety, to lows and PTSD (more on this below). It was a talk that examined, for a change, ‘the head’ as opposed to just ‘the heart’, when it comes to living the aftermath of, in this case, a cardiac diagnosis, though the issue of psychological fallout is by no means exclusive to cardiac patients, or even just patients. Indeed, healing the mind is an area often neglected for many who face a big life challenge, where after the immediate physical battle begins to subside, the mental one often comes a calling.
Our journey of ill health, or life crises is always going to be a journey of the head as well as the body, of emotions as well as of medical stats, of souls, as well as of human mechanics, because we are whole beings, with internal systems that connect our physical, emotional, psychological, and spiritual parts through a genius chemical and biological network that relies on this interconnectedness for its own survival. That interconnectedness is explained often through mind body medicine evidenced in the work of, Dr. Bernie Siegel or, Dr. Deepak Chopra, to name but two doctors who have written on the subject, or through the process of neuroscience on which there are umpteen experts, including the remarkable Dr. Jill Bolte Taylor who’s experience both as a neuroscientist and stroke survivor documented in the book My stroke of insight embodies the great mind body connection and healing challenge beautifully.
So, when a bomb goes off in our life, we can take it it is going to throw shrapnel into every crevice of our wellbeing, including our minds, emotions and even into our spiritual life too, if we have one. The shrapnel takes all forms when it enters the emotional and psychological systems; shock, disbelief, grief, disappointment, fear, sorrow, loss, all triggering a variety of thoughts. There’s the fear of the future, the ‘what ifs?’ that wreck our heads and keep us awake at night, the catastrophic images that can ambush our minds in tsunami like fashion, without warning, playing out horrendous, vivid images to its unwilling but captive audience of one. And there are other emotions playing out too, like grief, for the life you once had, or might have had, or for that carefree human being you once were, now living with the everyday reality that your freshly installed defibrillator could go off any moment, both a lifeline and reminder of how precarious your new life is, all at once.
But living in the real world each day is hard when you have tsunamis of fear and grief going off inside of you that produce feelings and mental images that often feel like they might just take your breath away. And the nights are often worse, when the scary but vivid images swoop in like vultures attacking the prey that is you, too weak and exhausted from the late hour and the side effects of illness, to fight off the nasty predator thoughts determined to get you.
A Xanax before bed became the only way for me to get some sleep, for almost two years of my life after my illness hit. When I didn’t take it, I found myself in combat for a whole night, night visions akin to a horror movie that left me with visions of my own funeral and of my children, motherless and weeping, visions that would cause me to bolt up in bed, my heart thumping, reactions not exactly ideal for the defibrillator inside me. But, it was Xanax or no sleep and the latter I knew was vital to being able to function somewhat during the day and being well. How I didn’t become addicted to Xanax I will never know, but I thank God that I didn’t, and that with time and other interventions for my mental health, I managed to overcome the night horrors and to sleep naturally and without it eventually.
The other interventions came in many forms.
About six months after diagnosis, I sought out counselling, but even in seeking it, I was scared to voice the real and terrifying fears I had in case that made them more likely to happen. But in practice I found the opposite happened. The more I was encouraged to purge myself of every scary thought, the more each one seemed to become diluted in strength. Added to this, counselling got me to look beyond the catastrophically negative images so well-rehearsed in my mind, to visualising positive alternatives, like the fact that I might actually live, and for a good long time, a suggestion that was almost shocking to me, so emersed had I become in the dark journey of expecting to die.
Journaling followed counselling, a chance for the purging to continue. Now it was about maintaining mental health, by releasing the negative thoughts and feelings on a daily basis. I no longer feared that expressing my worries, would actually manifest them, but knew it would help me put them in context. The beautiful and unexpected gift that came with this process was that after writing the struggles, the pen kept writing, to reveal possible approaches, solutions, ways forward. This often felt like a spiritual encounter, a prayer process, where the troubles or prayers were expressed, only to then, with time and through the written word, seem to be answered.
As I explored and invested in my mind, I spoke to all kinds of professionals and eventually received a diagnosis of PTSD (Post Traumatic Stress Disorder see Mayo clinic PTSD definition, causes and treatment for more that was estimated to have been severe immediately after illness but had become more moderate with time and solutions employed such as those mentioned above and others.
The ‘others’ took the form of time in nature, walking, my faith, reading, support groups and yes medication for anxiety too. In fact, I discovered, that like a good cake, I had to include lots of good ingredients for my mental wellbeing, if I wanted it to turn out good.
But in truth the mental health fallout of my diagnosis, medical experience, and physical legacy of heart failure, has never fully gone away. In truth it is more at a level where I can function, live well and enjoy life. But I am also aware that the anxiety can resurface with alarming ease at times. A physical twinge in my chest can resurrect negative emotions and thoughts to the power of 10. There is an enormous connection for me between the physical symptoms, the emotional reaction and dark thoughts. But awareness and practice of dealing with these emotions and mental quandaries and finding antidotes in life, means that when any of these mental health issues arise, I have my ‘go tos’… getting out in nature, reaching out to someone I know will understand, writing, praying, and if the mental health challenges continue for a while, then it’s back to counselling or medical intervention to help me cope with the process.
I write about this today, because psychological fall out from diagnosis is often so overlooked in healthcare. We are offered physical care supports in terms of medications and physical therapeutics, advice on diet and exercise, but what about our mental care? That we could separate the mind from the body in relation to anything in life would be a challenge, least of all with ill health and diagnosis, that could threaten our body’s very existence, the red warning light and sirens inevitably going to go off everywhere in our being as a result.
Not everyone will find the methods I talk about here as right for them. In fact, I think our choice of ingredients for mental wellbeing is as unique for our individual minds, as cake ingredients are to our taste buds. But the point is, is about being aware that we need to explore and discover what ingredients can help us in the first place.
And that awareness starts with the point of diagnosis, within the conversation that is had between the patient and their physical carer, that moment of the bomb going off in the patient’s life, where the patient is advised that there will be shrapnel in their emotional and psychological lives, but that with assistance they can develop a care plan for these areas of their health too, and that sometimes that care plan will leave them perhaps with a healthier mindset in life than they might otherwise have had, so may do them some good too (I know that to be true for me).
That we need services in place to support the patient through the mental health aspects of their condition, or someone living a different life crises, is vital too of course, like access to inexpensive counselling, information on treating anxiety, talks on dealing with depression, opening up the conversation, supports and ‘normality’ of these aspects of living with a diagnosis, or of having been through a big life challenge.
We live and we learn and if we are lucky, we get to help the next person into the arena with some of what we have lived and learned. To all those other and future patients and healthcare workers who might read this, or anyone else who has gone through or is going through something really challenging, remember there is always a mind body connection (if you are still sceptical, the act of blushing at mention of an old flame or embarrassing moment will probably demonstrate this well to you!). Both the mind and body need attention, care and support in the lives of all of us who are patients, newly diagnosed, or lifelong, or in those experiencing any other type of crises in life, or perhaps to all those experiencing… well… just being human!
Mind yourself, and your minds!
Le grà
Pauline
© Pauline O’Shea
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