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
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
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......