Being in Transition

Credit: C King

As a Coach, I sometimes use the Kubler-Ross curve when clients are facing some kind of transition. Having worked with the model for a number of years, I've more recently used it with those newly-diagnosed with a chronic condition. However, over the years, I've also come to  a few realisations that help deepen the understanding of the model, including around my own interactions with it.

The Curve is not always linear

I've always heard the Curve described by others as going from Point A to Point B. You experience shock and gradually work your way through the emotional stages toward acceptance, as if a simple and straightforward process: "Right, you've reached acceptance, congratulations!"

As with others hearing the news of a diagnosis for the first time, I went through each of the emotional stages one by one but I'm not sure that in nearly fourteen years, I have ever accepted MS in either body or in life. I acknowledge it, I know it's there, but I've never felt that I could tackle or fight something that I accept. I always felt the need to maintain my warrior status, as without it felt like defeat. And as much of a realist as I am, I'm not very good at defeat. With my most recent symptoms, I've had to reframe the idea of defeat and turn this on its head - acceptance isn't about defeat or failure, it's simply about finding ways through that work for you.

Working with clients, I also know that you can skip stages of the Curve, or even repeat them sometimes, depending on all manner of things including external stressors, the support of those around you (or lack of understanding), and on your emotional well being. 

You can get stuck in stages

It is very possible to stay in one stage for a long time. I've known someone with MS since their diagnosis a few years ago. Despite MS being one of the reasons we met, they never bring this up during our coffee catch ups, and deflect the conversation when I discuss my experiences.

I'm respectful of this and careful with how I discuss my MS with them. I've heard others talk about their feeling under pressure to accept their condition or guilt about dwelling on it: "People around me keep telling me to be strong." As yet, no one has the qualifications to be the time police. Nobody should say to you "it's been X [insert timeframe], you should have dealt with this by now, get over it!"  Acceptance is not an achievement; it's an emotional state. It cannot be forced. You will take the time you will take to work this out and this has no bearing on your strength of character, will or intelligence.

We have a saying in the MS community #NoTwoAretheSame and it's true. Just as we all have a different trajectory on our chronic illness journey, we all take different paths on the Curve. If you're feeling overwhelmed by any of these emotions, and you need non-judgmental support, ask for professional help. Rather than struggle on your own, it's important to get the right kind of support and encouragement to help you through these emotions.

Credit: C King

You'll visit the Curve more than once

Whilst the elements of the Kubler-Ross curve are often highly relevant for individuals who are newly-diagnosed, adjusting to their 'new normal,' I have discovered that the model holds even more significance as time passes. 

When public speaking, I always say that we don't just go through the Curve once. As the symptoms of our chronic illness change, we have to adapt. Adaption can mean a new struggle, or that more energy than normal is required to both face and overcome an obstacle. It is often the case that we revisit the curve with each new 'new' normal.

Let me give you a couple of examples.Thirteen years ago, I went through an episode of Optic Neuritis. Last year, a slight change in my vision in the same eye unveiled my very first permanent symptom. A Neuro-Opthalmologist discovered some atrophy in the optic nerve, meaning that a significant number of nerve fibres leading from the optic nerve to the macula, a small but vital part of the retina that sharpens your vision, have died. Though it sometimes feels like I'm looking through water, generally I can see well. I am acutely aware that my other eye doesn't work due to a childhood squint, however, so the prospect of losing my vision, obviously crosses my mind. The permanence of this led me to the angry 'Why me?' stage of the Curve.

Recently, due to some insidious symptoms over the past eighteen months, and to possible intolerance of my disease modifying treatment, myself and my neurologist agreed to change drugs. This is a big deal. Especially as for the first eleven years of MS I was without one. I'm now in the quiet period whilst arrangements are made for a new drug I don't want, but need. So, I'm on the Curve again, experiencing a few stages at once. Sometimes, I think I'm okay with it all, and then there are nights when I wake up in the early hours in a blind panic.

It's OK not to be OK

As much of a cliché as this is, it is nonetheless true of the sometimes continuously arduous league of emotions you face, borne from having a medical condition that is for ever unpredictable and, sometimes, invisible. 

The purpose of the Kubler-Ross curve is not to quicken the acceptance process, or to make you feel guilty that you haven't got to the next stage (if, like me, you ever do).  It's an illustrative tool, helpful to some who need understanding that what they are experiencing is completely normal and to help them acknowledge those feelings so that they are as  comfortable with the present circumstances as they can be.

As human beings, we don't much like change but we do eventually adapt, even if it doesn't always feel this way at the very start of anything new.Change in chronic illness can be gradual or fleeting, but it does happen.  'New' new normals will happen, transition happens, but it's important to acknowledge and deal with emotion as much as it is to find a physical problem, and to try to resolve it.  Our emotional well being is just as important as our physical one.

Further reading:

To find out more about Elisabeth-Kubler Ross, and the book 'On Death and Dying', visit https://www.ekrfoundation.org/5-stages-of-grief/on-death-and-dying or Kübler-Ross, E. (1973). On death and dying. Routledge.

Working as a Career Coach, I've used this in business and I really like the way it is described here: https://www.cleverism.com/understanding-kubler-ross-change-curve

If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme