One of the difficulties of being in a relationship with a person who has a chronic illness is the belief that we are alone. Everything is directed toward the person with the chronic illness and while that is fair enough, it is important to remember that the partner is also having to make adjustments to the illness.
In today's discussion I am going to outline my situation when my partner, Dr. Mavis Matheson, began having problems with post-polio, and how we managed our relationship as her post-polio progressed.
Mavis and I met in
Regina as interns in 1985. Early in our relationship she mentioned she
had had polio and had recovered. She led an active life, had swum competitively
and enjoyed hiking and skiing-all the things that I enjoy doing. She hadn't
yet heard of post-polio syndrome, so it never occurred to her that she
might experience problems in the future.
We had two children
and worked together at the same clinic for five years. We were traveling
and enjoying life together-things were working pretty well. She was one
of those active, Type A people-always doing five things at the same time.
In 1991 we decided
to form a clinic of our own. This required a lot of organizing and Mavis
did all of the detail work. she was finding herself increasingly tired,
needing to sleep more and becoming irritable. I was also becoming irritable
and we found ourselves pulling away from each other. We thought the changes
in our relationship were due to the stress of setting up the clinic and
expected things to right themselves when we opened. Things did settled
down. We shared the practice, I was working 3 days a week and Mavis worked
2-1/2 days a week. This gave us more time with each other and the children.
In early 1993,1 found
Mavis becoming emotionally distant. She was tired, going to bed more frequently
and having more aches and pains. She was limping more and found herself
spending the weekends recovering from the work week. Over the spring her
symptoms got worse. Mavis began reading about post-polio syndrome and quickly
realized that what she was reading was describing what she was experiencing.
Her family doctor was not helpful as she had no familiarity with post-polio.
Mavis knew she had to
start making some changes in her life. She cut out a half hour from each
work day and, rather than running to work, started using her car. She found
that she was ending the day in better spirits but was uncertain whether
she was going to be able to get going the next day.
Things came to a
head in 1993 when I got a call from the receptionist at the clinic saying
that Mavis was taking medications from the drug cupboard. I cursed myself
for not realizing that things were getting so bad. I was in denial and
not paying enough attention to the realities of Mavis' illness.
We reorganized our
responsibilities at the clinic, Mavis took some time off and I began to
work full time. she did a time/energy study while she was at home and found
that she was taking over 300 steps a day-while she was trying to cut down
and rest. We lived in a four level split with the bathroom on one level
and the kitchen on another. I realized that we needed to move to a one
level home.
During one short
month we went from having an equal relationship working together, to Mavis
not working, me working full time and the family having to change our home.
We also had to try to explain what was happening to the children who were
3 & 6 at the time.
As time went on, Mavis
found that she was able to do less. She was not recovering and was becoming
increasingly fatigued, even with her modified schedule. She began to get
more depressed. I was becoming stressed and irritable as well and did not
know what to do to make things better. I found myself staying up later
and letting myself get more fatigued,
thinking-if she's tired, I should be tired too. It's not very rational
but when people are under stress they're not always
rational.
Eventually Mavis insisted
that I seek counseling. This was useful because when I was growing up my
mother suffered from severe depression. It was like living with a chronic
illness. There were times when I would come home and not know what situation
I would be facing. When I left home I figured I had left the chronic illness
and not have to deal with it again. Now here I was in the same situation
only it wasn't going to be a couple of years and I would be able to leave.
That was very hard to deal with.
Our situation continued
to deteriorate throughout the fall and just before Christmas Mavis went
into the hospital because of other health concerns perhaps ALS or Multiple
Sclerosis. She was in the hospital for a week and had all the tests done.
The doctors said "this is just a psychosomatic thing". By that time I had
read enough, knew enough and observed Mavis enough to know that
this was not the case. Mavis was depressed and I had to support her through that psychosomatic nonsense.
In January I started to
keep a journal of my feelings, especially the feelings you don't want to
share with your spouse. You don't want to tell them that you are tired
of dealing with the problems, that you are tired of not being able to do
things, and you are angry at them. It's not their fault but those feelings
are still there and the journal provided an important outlet.
Mavis went to see
Dr. Rubin Feldman in Edmonton. He did a few simple tests and diagnosed
her a classic case of PPS. He counseled her about changes she would need
to make to maintain her health. She learned that many of the lifestyle
changes we had gone through already were the things that she needed.
While she was in Edmonton
I continued my journal, exploring my goals and values. I realized that
the things that I found important in my life were still available to me
in our relationship. It was important to me to have challenges, to grow personally and to have satisfaction. Our
relationship provided a situation where I could have all of this. I didn't
have to run away to be fulfilled.
It was also at this time that
I realized one of the things Mavis was working through was the fear that
she was going to be abandoned, that I was going to leave her. I found that
the reason I wasn't running away was that I was meeting my needs in the
relationship. The realization that Mavis felt that I might run away gave
me a chance to show my commitment to the
relationship. We hadn't married yet and I thought this was an appropriate
time to propose to her. This was an important
step in her realization that I was not going to leave the relationship.
Things were still unsettled
though and we both needed a lot of separate time. Mavis needed time to
come to terms with herself and to develop ways to rest and get her energy
back. I needed time for myself to come to terms with what was happening
with her, to grieve through the losses and to get comfortable with our
recent changes.
In May 1994 things came
to a head. Mavis got so tired and so distressed that she checked herself
into the hospital. While in the hospital, she developed a routine of sleeping
in the afternoons and resting and she felt much better. It was at this
time I realized that either this relationship is going to work or it's
not. Interestingly enough, while Mavis was in the hospital she had come
to the same conclusion. We started settling into the routines of a more
regular relationship. We discovered that there were ways of traveling with
a disability. We discovered there are ways to conserve energy. We got a
housekeeper. We found through trial and error that we were able to build
our relationship again. We realized that we had some losses but there were
new challenges that keep it worthwhile and exciting.
I have read many books
about family relationships and chronic illness and through them, have learned
some very good advice. Be aware of your attitudes about chronic illness.
If you have had previous exposure to chronic illness, there may have been
some very positive or really negative events which could colour your perception
and your relationship. My previous exposure had been a very negative experience
and I assumed that the current situation would be negative as
well.
It is useful to be in
the present and not dwell on what might happen tomorrow or grieve about
things that have changed. Instead, concentrate on what is happening today.
Worry about tomorrow tomorrow. Getting worked up about things that might
happen is a big waste of energy. Know your values and goals and be honest
with yourself.
Take ownership.
Acknowledge the situation and acknowledge that you want to be in the relationship.
It is also important
to maintain boundaries and give yourself some separation. I live with an
illness but it is not my illness. I am affected by it but I don't have
to suffer from it. I can do things that I enjoy doing without having to
feel guilty that my spouse is not able to do them. This separation gives
me the energy to come home and do things together and deal
with the stressful parts of the relationship when they arise.
All of these things are
factors in taking care of yourself and your relationship. If you don't
take care of yourself, you probably won't be helpful to your spouse. Sometimes
you might need to acknowledge that at least things aren't getting worse
and might even improve. Occasionally Mavis and I find there is another
loss we did not expect. We find ways to adapt
and get around the hurdle. We have found that our relationship is working
because we've been through this challenge
together. We each had to work on separate parts and were able to use the
things that we learned to work together.
Dr. Adam Gruszczynski