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Change can be difficult to cope with at any stage of life – or for that matter any condition of life. However, life with MS, regardless of which form is a life of constant change.

Our group was at one time required to cope with an enormous change as we were forced to find an alternative location on the Internet to meet.

We could have succumbed to depression, bitterness and resentment. However, we chose to approach this new set of circumstance with all the enthusiasm that facing a challenge can afford.

We found a new location to form our clubhouse and have since gathered many new members. We realized that it was not the location, but the people – our MS family – who have made our lives less isolated. All we needed was a format which, we could cope with, and each other.

Because our lives are constantly changing with each new level of disability, none of us cope well with new changes, new expectations. We all feel at one time or another the need to keep as much of our lives as ‘constant’ as possible, in order to feel ‘safety’ and security. This is because if we have a life which is structured, it is therefore predictable and we do not feel as threatened or distressed. A structured environment means that we know what is expected of us, what is going to happen, and how well we will fare.

It is very true that fear of the unknown is the greatest fear of all and the greatest form of stress. When placed in unknown situations, such as changed circumstance or environment, we feel confused, upset and uncertain, simply because we are not aware of which of our ‘defense’ strategies to call upon.

Fear leaves us feeling even more vulnerable, open to thoughts of danger or threat. When life is viewed from a wheelchair or the safety of confinement at home, the ‘outside world’ can indeed be overwhelming.

The keys to coping with any change of circumstances are attitude, step by step adjustment and a supportive environment.


Change may be viewed as a challenge to be faced with excitement of anticipation, or it may be approached with dread, resentment and rebellion. If it is a change of circumstances beyond either our control or our choice, it does little good to even try to adapt while ‘kicking and screaming’. However, if the change is approached with excitement and viewed as a challenge to be overcome, the difference in attitude may well determine the level of success of the outcome.


Once it is realized the source of distress of change (for example fear of the unknown), it is much easier to adjust to change and to learn how to cope with new expectations of change. It also takes time to adjust, and adapt and ultimately to embrace the new situation or circumstance.

With most change, comes loss – that is loss of the familiar or the loss of a desired circumstance. By allowing one self permission to grieve, to reflect or reminisce the process of change is much smoother.

Adapting to change

If the situation which has changed is of a major importance, for example a move to a new home, or town, then the amount of change which has occurred may be overwhelming. It is important with any new challenge to break down the situation into smaller, more manageable ‘pieces’. It is also important to the level of coping to try and keep as much as possible of the familiar present. For example, if it is a new house, decorating in a similar style with possessions placed in similar locations will enhance a feeling of well being and safety.


A supporting environment is one where an individual is understood, loved and cared for. Often, however people with MS do not feel supported or understood. This is why it is critical for us to learn to express our needs, our confusion, our feelings concerning our difficulties. Many family members do not understand that to us a structured environment and a constant routine are essential to our sense of safety and well being. Therefore, it is important above all to learn to communicate these needs to carers and loved ones.

It is not that we cannot accept or cope with change, it is that to those of us who live with constant physical changes, any environmental change can feel like the proverbial straw on the camel’s back.

Any new change is the opportunity for a new beginning, of hope renewed and the satisfaction gained from adapting well enough to appreciate what we have, while gaining a new joy of living each day to the fullest.

Regardless of the change - either personal or environmental it sometimes takes all of our resources so that we can hang on to some things which are constant and reassuring. Sometimes the change is so overwhelming that it literally takes the wind out of our sails and we find ourselves drifting on oceans of despair being tossed by waves of anger or frustration or grief.

Because our lives, our bodies and even our sense of identity is always changing - any other change seems to be an added burden to carry. Even change which is good or exciting can seem to make us feel suddenly insecure even threatened - why is this so? why do we seek to hang on to the last breath to circumstances or people long after it is healthy to do so?

Partly it is due to the fear factor associated with living with progressive MS - what will the future hold, how far will we progress, how little of "us" will this disease leave alone? All of these questions carried either consciously or unconsciously leave us feeling powerless and fragile beings....so any change, is just one more thing beyond our "control".

Realistically of course, very little is within our control in life - in fact the only certainty once we are born is that we will one day cease to live - other than that life "happens" when you make other plans.

However, we do continue to strive for a constant, something stable and secure. The more structured our environment or our life, the less vulnerable we feel - the more predictable and 'safe' we feel.

All of us have developed over our lifetimes coping strategies for change - some approach change as a challenge others become the proverbial ostrich.

Changes sometimes force us to re-evaluate priorities, somethings are beyond our control, other things within our control and so many things really don't matter in the long run......

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