Wait! This is chaos.

Make it go away. I hate you. I don’t want to talk about it. It’s okay, I don’t care. Leave me alone. I love you.

Beginning to Watch

For some people diagnosis comes quickly, a lightning spring shower swooping out of nowhere, tearing the sky apart. One moment they are healthy and happy – and the next they’re crying in pain and fear. For others it’s gradual, like following a paper trail, picking up pieces of the puzzle one at a time until everything makes sense, and the sneaking suspicion is confirmed.

Sometimes we as Watchers are there in the moment of discovery, we are following them down the path and scrunching the clues damply in our hands. I have been there. Other times we arrive in the middle or come rushing in at the end. Often we can enter their lives after a decade or two have passed, and then we struggle to understand not only the illness, but the many highs and lows of the intervening years. We could not be with them during that pivotal moment and now we feel as though we have a lifetime of catching up to do. I’ve experienced that too.copy-of-quote-pinterest-template

This is it.

This post is about being there at or soon after the initial diagnosis. There is nothing quite like it, that moment when their life (and ours too) is torn roughly from normality, shaken wildly and returned upside down and back the front. It is a moment of true vulnerability, where (just for a heartbeat) the curtains of propriety are thoroughly torn.

Does that sound exaggerated? I don’t think it is. You would imagine there are many traumatic events that can destroy a life enough so that everyone sees and feels free to comment, and the victims themselves are unashamed of crying or crumpling. Yet my experience has been that this is not the case. For the most part, people crush their sorrows into tiny boxes and life simply ‘goes on’.

You can’t really do that with chronic illness. It’s a huge thing, one of the few things perhaps that can utterly derail a life. Nothing will ever be the same, and everyone knows about it.

Perhaps this is because unlike most traumatic events, the explosion does not begin the resolution. Chronic illness happens, and then it keeps happening. A diagnosis must be lived through.

And through.

And through.

But they’re reacting wrong!

As our Loved One reacts and responds to their diagnosis, it’s easy for us to be critical. Not on purpose – we know as well as anybody (or at least we will come to know) that everyone reacts reacts differently to pain and all reactions are valid. Nevertheless, when our Loved One refuses to accept help or denies their diagnosis, it can be difficult. When they collapse into a helpless ball of tears and saliva, should we be expected to know what to do?

After all, it’s new for us too! Although we are not the epicenter – our own bodies and minds may remain unaffected – we are still caught up in the storm.

How should our Loved One respond? How should we respond?

In desperation we search through the archives of our knowledge – and come up with the stereotypical film hero who soldiers on, overcomes all odds, retains their optimism and achieves a happy finale within the space of two hours.

Why isn’t our Loved One behaving like that?

They ought to be more like us

After all, we’re hurting too. We feel their pain and our own, and it would make it a lot easier if they could be a bit more like that film hero. Why can’t they accept their diagnosis with grace and courage? Can’t they see the opportunity this is for them to grow their character? To encourage others? To bring good out of evil, in a Pollyanna sort of way?

Yet reality says that in sickness there is no ‘should’ but only ‘is’.

All well and good, but –

If it were us who were sick, if the diagnosis, the burden, was ours, we would behave differently. Of course we would. We would suffer heroically, we would come to terms with it quicker, deal with it better, be a bit kinder to ourselves and those around us.

Would we?

I have my doubts. By God’s grace, we’ll never know. And precisely because of that, we cannot afford to judge.

Sometimes there’s no room for anything but pain

In the end, all we can know for certain is that our Loved One will hurt. Everything else is up in the air.

They may be sad or angry. Possibly both at once depending on how they feel and the time of day.

They might want to ignore the diagnosis or process it later.

They might laugh about some of the more strange or ironic elements and then cry at night when no one can see.

They may be insufferably cranky, or argumentative and defensive.

They may have a stiffer upper lip than the most heroic action hero, or be calmer and more peaceful than any feeling person has the right to be.

But they will still hurt, and so will we. Just as their reactions are valid, so are ours. It is worth pointing out (again) that just because our situation is different (we are not the ill one), it does not mean that our pain and grief is less. Different, yes. Less important?

No.

Time won’t stand still

It is amazing how rushed a diagnosis can be. You receive it and then feel as though you need at least two weeks to get used to the idea, let alone how to live with it, but then all of a sudden life accelerates. It is as though ‘diagnosis’ is a ‘fast forward’ button. All at once you have to figure out how to support your loved one and organize a dozen urgent practical matters, not to mention the endless list of appointments and paperwork and phone calls and conversations and finding and dodging by turns the People That Have to be Told, and the People That Mustn’t be Told.

Life is busy and doesn’t look like it will slow down anytime soon. When we finally get the chance to think, we realise in shock that just as we have assumptions for our Loved Ones, so we have assumptions for ourselves.

We are meant to be strong

We are meant to be the strong ones. The pillar of support for our Loved One. We are supposed to declare that we will drop out of work or study in order to devote our lives to them. We are supposed to cheerfully drive them everywhere and cook dinner and still have enough energy left to make them laugh.

We are supposed to pass this life test with flying colours… and instead we feel like we’re failing. Instead of emerging stronger and more resilient, this tragedy is uncovering just how weak we really are.

Perhaps we are sad or furious or both. Angry because God, the doctors, the world and our Loved One is supposed to be able to fix this. Sad because we have an inkling our life is about to change and we may not be able to do what we want anymore, plus our Loved One is hurting and we are absolutely helpless.

Perhaps we don’t feel anything at all.

Normal is not right

And then there is faith.

Maybe we want to pray but our prayers seem to rebound at the ceiling and the words in our Bible don’t make sense. Or perhaps we’re bone-shakingly angry at God, who had better fix this problem ASAP Or Else. Perhaps we feel our faith being strengthened and seem closer to God than ever before, or maybe our faith just appears to stay the same, we know God and trust Him just as well always did. Is that normal?

It is not.

Thankfully tragedy is not normal, and never should be. Thus there is no normal response. We are all different and every situation is different. But different is not wrong, just as normal is not necessarily right.

It simply is. And while it is, what do we do? We leave our assumptions and our pride and our failures behind. We cut some slack to our Loved Ones and ourselves without compromising on what is Right. We breathe, we laugh, we cry. We turn to our Maker and turn to our friends. We forget the old maxim about dancing in the storm, and we treasure the fact that sometimes it is okay to simply weather it.

 

// Do you think there’s a normal response to tragedy? What makes a diagnosis hard?

Don’t be a silent reader – share your thoughts and leave a comment below!

This is the first post in a series about dealing with life after a diagnosis: Future posts will cover specific emotions (guilt, sadness, anger..) and specific problems (breaking the news to others, answering questions when there’s nothing to say…) that can arise.copy-of-who-will-buythis-wonderful-morning_im-so-highi-swear-i-could-fly-so-what-am-i-to-doto-keep-the-sky-so-blue_there-must-be-2

 

 

 

 

 

 

 

 

 

Author: Emily J. M.

Hi, I'm Emily. Two of my closest family members struggle with chronic illness, and I watch them. That's hard, and so I write about life as a 'Watcher', what it looks like to support them and find Hope.

1 thought on “Wait! This is chaos.”

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