Have you passed the stages of acceptance to having
Multiple Sclerosis?

Completing all the stages of acceptance of your reality as a person living with Multiple Sclerosis is tough but totally possible and from my personal experience, I can tell you that it is not only necessary but it’s 100% doable!

When researching this particular subject I kept running into Dr. Elisabeth Kübler-Ross. She’s the author of the best seller book On Death and Dying that talks candidly about the various stages of acceptance involved when reaching for acceptance and lost.

We know that MS is not fatal but all the stages that every person facing a terminal diagnosis or in our case, the diagnosis of an incurable disease like MS, are pretty much the same.

A LITTLE BIT OF HISTORY ON THE STAGES OF ACCEPTANCE

Dr. Elizabeth Kübler-Ross (1926 – 2004) was a doctor in Switzerland who condemned the unkindness shown by most doctors towards folks with terminal illnesses.

Without going into too many details here, it will suffice to say that Dr. Kübler-Ross cycle sprung from the notion that terminal illnesses were an embarrassment for doctors and she spent a lot of time with dying people, both comforting and studying them.

She wrote a book, called On Death and Dying which included a cycle of emotional states that is often referred to (but not exclusively called) the Grief Cycle.

In the following years, it was noticed that this emotional cycle was not exclusive just to the terminally ill, but also other people who were affected by bad news, such as being diagnosed with an incurable disease like Multiple Sclerosis.

THE STAGES OF ACCEPTANCE

If you were diagnosed with MS, just like I was almost 15 years ago, in order to facilitate our understanding of the extended grief cycle resulting from the stages of acceptance we must start at a stable point in the cycle. Doing so is helpful in terms of the subsequent reaction on hearing the bad news. And then, into the calm of this relative bliss we were living, a bombshell bursts...You might have MS!

Your first reaction to the doctor’s diagnosis is one of immobilized shock. I don’t know about you but I sure remember my initial reaction after hearing the news that I might have Multiple Sclerosis: It was one of Total disbelief of what was going on.

This stage initially may appear as if there is no reaction at all to the news. You may nod and accept the news without appearing to be troubled by it. But inside, a totally different story is unfolding and you are frozen until the news really sinks in. The first time you received the news you hear it but the news has not really taken hold yet. To get the news through, you may need to be told several times.

The second stage of the stages of acceptance cycle is one of blind denial. You basically pretend that the news has not been given. People effectively close their eyes to any evidence and pretend that nothing has happened. I remember that my reaction was more one of ignoring the diagnosis at first and not give it too much thought; I acted as...... if nothing had happened!

While reading and learning about Dr. Kübler-Ross’s grief cycle I discovered that you can move a person out of denial by deliberately provoking them to anger but, how do you do that? You need to hold up the future (sympathetically) so they cannot avoid or deny it. Tell them that it is not fair. Show anger yourself (thus legitimizing that they get angry).

The third phase of the stages of acceptance is Anger or frustrated outpouring of bottled-up emotion. There are two things worth mentioning here:

1. This anger is an explosion of emotion
Where the bottled-up feelings of the previous stages are expulsed in a huge outpouring of grief and
2. Whoever is in the way is likely to be blamed

The phrase 'Why me?' may be repeated in an endless loop in your head

The main thing here is to respect and give the necessary space. Just remember this: The more the storm blows, the sooner it will blow itself out.

The experts say “Beware, when faced with anger, of it becoming an argument where you may push them back into denial or cause later problems. Support their anger. Accept it. Let them be angry at you.”

The fourth stage in the stages of acceptance is one of desperate bargaining. During this stage you are seeking ways to avoid having the bad thing happen. Bargaining is thus a vain expression of hope that the bad news is reversible. Bargaining in illness like Multiple Sclerosis includes seeking alternative therapies and experimental drugs.

My personal experience with this aspect of the cycle has been very good after all. This is true because I was able to moved thru this bargain stage with a more profound understanding of the important things in my life (more than ever now with MS) and got a much greater appreciation of my religious beliefs.

The fifth stage in the stages of acceptance is one of paralyzed depression. The inevitability of the news eventually (and not before time) sinks in and you reluctantly accept the news.

You move from the liveliness of anger and bargaining into a state of unhappiness and low spirits. In this deep depression, folks with a MS diagnosis see only a horrible road ahead with nothing good beyond it. In turning in towards themselves, MSers turn away from any solution and any help that others can give them.

If you’re helping a friend or a relative go thru the grief cycle, the thing to do here is to simply be there.

Accepting them in all their misery. Folks in general who are depressed feel very much alone and your company, even though it may not seem that way, is likely to be welcome.

The second thing to do is to keep them moving. It is easy to get stuck in depression, and the longer they stay there, the deeper into the mud they are likely to slide. So keep up a steady stream of support, showing them that there is light ahead and encouraging them to reach towards it.

The sixth stage in the stages of acceptance is one of cautious testing or one of seeking realistic solutions. This stage is not explicitly in the original Kübler-Ross model. However, it is useful to understand and facilitating change.

Even in the pit of depressive despair, reality eventually starts to bite and the person realizes that they cannot stay in that deep, dark hole forever.

They thus start looking for realistic things that they can do. These may be taken on as 'experiments' to see if doing these things help the situation in any way. As this activity starts to work, at least in some ways, it is found to be preferred to the depression and so the person crawls out of that dark hole.

This escape is often done with the support of friends, family and professionals who specialize in helping people in whatever situation this is. In medicine, hospices, for example, help the terminally ill face their short futures with courage.

The seventh and final stage is one of positive acceptance. Acceptance is typically visible by people taking ownership both for themselves and their actions.

They start to do things and take note of the results, and then changing their actions in response. They will appear increasingly happier and more content as they find their way forward.

A final note: Help the person that has gone thru the cycle to establish themselves permanently in their new position.

Fix them there, ensuring that there is no way back to the previous situation. Congratulate them on getting through the change. Celebrate the completion of their transition.

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