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"Nothing will be normal Again"

Anyone who has been diagnosed with a chronic illness, or is close to someone who has, will be aware that there is a great deal of ‘adapting’ to be done following a diagnosis. This adaption to our illness/disability is wholly unique to the patient, and there is no time limit as to how long it may take. This fact alone can be a source of great frustration for both patient and partner/pal/parent, as we want, and expect, our lives to generally go back to ‘normal’ as soon as possible after. This is sadly an impossibility, as nothing will be ‘normal’ again; the diagnosis of a chronic condition is just the beginning.

Sounds a bit like the tagline for a weepy Hollywood blockbuster in waiting doesn’t it; “Nothing will be normal again”. Dramatic, stirring, startling. Five Stars. Ideally, we’ll have Jon Hamm playing my Doctor (and inevitable love interest) and me playing me. I don’t care that I have zero acting experience, I can emote as much as the next actor; I once lied to my boss that I was snuck in a snowdrift to get out of work and he bought it all despite my kettle clicking off and cat meowing in the background, so don’t you DARE underestimate my abilities.

This time limit on how quickly we adapt to a diagnosis is dependant on the condition too, of course; not just the individual. Add to that mix the idea if you have a disability that means you are suddenly physically less able than you once were, and you find yourself cracking open a whole new can of worms. We are not just coping with the mental adjustments that must be made to acknowledge a chronic condition, but now find ourselves stranded in the position of having to amend the way we physically and mentally, live. No small feat let me tell you. Well I don’t need to tell you, that’s kind of the whole point I guess, but I’ll do it anyway.

I commonly relate this adaption to chronic illness akin to that of grief. We grieve for our old lives, our old bodies, our potentially shortened futures. We feel deeply sad. This sadness, like that which we feel when grieving any loss, tends to come in waves. Some moments crashing and utterly overpowering, making it impossible to see a way beyond them. Some slower; calm, persistent and intense lapping waves that still startle and irritate us with their insistence on being felt.

Crying and letting these feelings out can often be a release. Like a once frozen pipe repaired, suddenly hot water comes crashing through and for a while things feel better. You feel. But that sense of release and perhaps relief is usually short lived. The pipe freezes again and you feel cold; isolated.  Naturally this innate sadness following a diagnosis is not across the board or even inevitable for every patient. I can’t of course speak for everyone’s reaction to a diagnosis either, but in my own experience a mixed reaction of shock, sadness and confusion, is decidedly more common than that of us skipping out of the doctor’s surgery clicking our heels together and sailing off into the sunset on that speed-boat you won on Bullseye in 1987.

Again, those are not the only two options, don’t panic because you can’t click your heels together. Practice makes perfect.

So, following on from this innate sadness that can come as a result of a damning diagnosis, then comes the emotional and (potential) mental health issues. I stress ‘potential’ here; not everyone diagnosed with a chronic illness goes on to have an issue with their mental health. But more and more these psychological issues are becoming more prevalent amongst those of us with poor physical health. We may find we will experience anxiety, depression, PTSD, trauma. Something many of us fail to grasp is that we don’t have to have experienced a horrific accident, a dreadful attack or a distressing bereavement in order to claim we have suffered trauma. Being advised we now have a life-long and often life-changing illness is traumatic in of itself. Not to mention the spells in hospital, the venture into the unknown, the dignity-stripping procedures and painful periods of recovery following surgery and treatment. Life with chronic illness is traumatic, and therefore we should feel no shame at attempting to manage the physiological effects we are laden with too.

These possible mental health issues do not always stem from the point of diagnosis. Issues such as depression and anxiety may crop up months, or even years down the line. We might notice the approach of these problems when we have had a long and persistent flare-up, following surgery recovery, or simply as a result of the utter exhaustion of living day to day with what is often essentially a disability. As patients and health professionals alike, if we are to aim to establish how to best remedy the issue of mental health stemming from, or being exacerbated by chronic illness, we firstly need to understand why mental illnesses and chronic physical conditions ‘co-exist’. Much like Melania and Donald Trump, we may understand the basics of their union, but many of the details are swept under the carpet and are frankly baffling.

I should of course clarify an important fact, before anyone starts stomping their feet, trolling me on the inter-web and sending me stool samples through the post. Despite loving all three of those things, it’s important you don’t assume I’m trying to imply that this issue of poor mental health is singularly a result of chronic illness. The idea of one stemming from the other doesn’t always follow one direction. Much like myself, after their tour manager filed a restraining order. It stands to reason that many chronic illness patients may already experience poor mental health, in one or many of its forms, and this in itself is generally considered a long-term condition on its own merits.

Living with mental illness can lead to its own physical disturbances alongside the mental.  Patients living with mental illness can also experience a range of physical symptoms, that will result either from the illness itself and/or as a consequence of treatment. Mental illnesses can commonly alter many functions such hormonal balances and sleep cycles, while many psychiatric/depression/anxiety medications may have side-effects ranging from daily irritations such as excessive perspiration to longer-term concerns such as heart problems. None of this should be taken lightly. We should feel as free to talk about these issues as we are with our physical issues. Everything begins with a conversation, so if we feel sad, or angry, or are just struggling to put one metaphorical foot in from of the other, we should talk to someone we trust. Like an incurable illness, we won’t be ‘fixed’ overnight, but we will be heading in the right direction; towards the problem and not Road Runner-ing away from them.