I have always been open about my condition and my experiences, my story is an open book and I wear my heart on my sleeve. This perhaps to the annoyance of some and perhaps to the perceived act of attention seeking to others - oh yes, would you believe I enjoy living with a chronic illness and feeling like a camels backside most days because of all the sympathy I can get).
But overall it's for awareness and the fact that PEOPLE NEED TO KNOW ABOUT IT.
Some people choose to very much keep their journeys quiet, and that's their choice, this illness changes you in so many unbelievable ways and I feel their need to stay silent like it's a suppressed part of myself, because sometimes you do just get so goddamn sick of talking about and explaining it. By having that silence you get a shred of normality, a healthy element of denial perhaps keeping those words only for those that know and love you, but I'd consider it in some cases to actually save your sanity.
And so that leads me into what I intended this article to be about - see I'm procrastinating already as I'm uncomfortably twitching in my seat wondering how to put the rest of this into words. Hmm.. So here's the big question.
What is the impact of chronic illness/ lupus on a patients mental health?
Sounds like an essay title doesn't it?
Well, I'm far from an expert, I can only tell you my experiences and hope that it doesn't send you fleeing to the hills and ignoring my WhatsApp messages. I was recently inspired by a mummy friend who was brutally honest about her struggles with mental health, the responses were brave and honest in individuals relaying their own encounters, I couldn't help but not feel surprised. According to Mind 1 in 4 people in the U.K. will encounter a problem with their mental health this year so why do we all feel the need to carry on keeping silent about it? Is it something other than the fear of judgement? fear it as a sign of weakness? Lack of education? I think most of us can sympathise so why do we judge?
The experiences I encountered
when I was ill had just as much a psychological impact as they did physical. Despite my MCTD/lupus diagnosis a year earlier my descent into renal failure, nephrotic syndrome, pulmonary oedema and heart failure were rapid. Missed warning signs and my own ignorance plunged me head first into a confusing whirl of needles and drips stuck everywhere, pumped with chemo, hair loss, swelling twice my size with fluid, hospital stays and CPAP masks and an instant detainment of everything 'normal' to you.
No warning, no preparation, just SNAP everything. Has. Changed.
I think of the impact as three-fold,
1. The knowledge that your body is failing, you are failing and you have no control. You are dangling off a cliff staring at your own mortality just below you. There's nothing more frightening than seeing how fragile life is and how insignificant you are on this mortal coil, to provide a good dose of health anxiety for the rest of your life.
2. The trauma of what you're experiencing during that time. Whether hours weeks or months. For me it was an accumulation of experiences, there were traumatic days and moments so alien and happening so fast that as a coping mechanism, just furrowed deep into my brain to be dealt with later. Then the whole experience and time period I was ill and 'outside my realm of normality' affected me as a whole. The longevity of the process (for me) weakened me slowly, like a leaking tap drip, dripping my confidence and contentment with life down the drain.
3. The adjustment and denial that your life has inevitably changed. Anger and resentment at no longer having what you had before, and the freedom you had, taken without a choice. No matter how much you move on and rebuild your life and be grateful for what you have, that is the truth and I won't ever stop wondering how different things would be if I'd never got ill.
I went back to work part time on doctors advice, about 6 weeks after I was stable and about 4 weeks after my last infusion/treatment. I was looking healthy, feeling more energetic and overall my body was recovering well.
But it was apparent my mind was not. I'd wake screaming with night terrors I couldn't remember. I couldn't close my eyes at night without days or events in hospital replaying. I was nervous, anxious at work feeling useless in situations I'd dealt with 100 times. It was like I was stuck watching a film of what should be my life but wasn't, the days and people whizzing around me yet I felt like I didn't belong or know any of them. An alien, an outsider looking in, stuck in the wrong body and wondering how to escape. I was lost, stood in forest with trees towering above me, each direction looking exactly the same.
I was referred by my renal consultant to the clinical psychology team who concluded I'd been experiencing some symptoms of PTSD. The serious and rapid decline of my health, and the series of events had occurred so rapidly my brain hadn't processed them correctly, so through a series of sessions I had to reprocess them, put them in order and understand why they happened.
It helped, but I was and forever are changed by my experiences. I had a plan for my life, a story I intended to tell , but apparently that wasn't meant to be published and now it's just a case of rewriting the book.
A colleague said recently, to look at me I'd have never known anything was wrong. I thought.. thats just half of the story.
So many people are fighting a hidden battle, you can look at them and never know their inner monologue, so I'm always a great believer in being kind.
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