by Anne Fulton, M. Ed.
UPdate Winter 2001
One of the first issues to be faced by a person with EI is isolation. This aspect of the illness can be very painful, and very lonely. There can be a great range in how much a person with this illness may need to remain isolated from the scents and toxins of the world, but all degrees involve more time alone.
Those close to you may chose to spend more time with you. As a result they will be missing out on a lot of social interaction too. They may do things without you, which can be lonely for them. Usually, the more intimate a relationship with an ill person is, the more likely the healthy person is to be isolated too. I have noticed that the healthy spouse was often as isolated, in many respects, as the ill partner. Isolation can be a tremendous strain on any relationship. The more creative ways that can be found to minimize the isolation, the happier everyone will be.
I know it can get pretty tiring hearing people say things like, "What did you learn from your illness?", especially on the days you can barely think or talk. On the other hand, there is something to be said for being forced to slow down, stand apart from the world, spend a lot more time with ourselves than we used to be able to handle, and look at ourselves and the world from a new perspective. This type of experience could conceivably be the breeding ground for wisdom. Also, this new perspective may incline us to rework our relationships so that they are much more satisfying.
is a big part of the journey through any illness. This journey involves
not only the person who is ill, but also the friends, family and anyone
close to them. So many hopes and dreams are lost. With EI,
we can lose where we live, where we socialize, what we normally eat, friends,
our ability to think clearly and remember, our careers and jobs, our energy,
self-image and more. When someone is beset with an illness of protracted
and indeterminate length, family and friends too can be thrown into a process
of grieving. This can be characterized initially by shock, denial,
anger, and depression. Grieving is normal for all involved, and should
When someone becomes ill, and cannot do some of the things for themselves
which they once did, those close by can become unwillingly forced into
the position of caregiver. Some adapt, some don't. For
someone who is the type of caregiver who tends to seek rescue projects,
caring for someone with EI can burn you out. If you don't want to
be a caretaker but force yourself to do it out of guilt or obligation,
you can also burn out. If you do burn out, you are likely to experience
a lot of resentment. And the last thing someone who is ill needs
is your resentment. Even if you are a willing caregiver, you must
absolutely share the burden of care,
also important that the person who is ill be aware that their caregiver
is in a difficult position too. The illness affects them also.
Let them get the support they need, encourage them to get it when they
are not seeking it, don't make totally unreasonable demands, and if at
all possible, try to involve caregivers whose caregiving is coming from
a healthy and truly caring place. And if the burden of
are just three of the many factors that can affect relationships when illness
is present. Illness is definitely not easy. At all. For
anyone. Nor are relationships. Yet relationships with another
human being may be one of the greatest gifts we ever have . When
this is tested by illness, certainly the level of commitment to another
Illness has a way of separating out those who are able to really be there for us, and those who aren't. However, with work, and seeking various supports, healthy, challenging and enriching relationships can and do work flourish within the context of illness.
Anne Fulton, M.Ed. (Counselling), CCC,
RPC, CGC lives in the Halifax area, and offers individual and group counselling
and workshops in the area of chronic illness/disability and other areas.
Mark Nepo recently published The Book of Awakening: Having the Life You Want by Being Present to the Life You Have. Conari Press, ISBN 1-57324-117-2.