E-INTERVIEW with Michael Cunningham - Cystic Fibrosis ...

NATIONAL CONFERENCE
In the long run, it will mean introducing someone to
the nitty gritty of life with CF. The tedium of the routine.....
the highs and the lows. Your partner may
want to do everything for you, to help with your medications
and your physio. You may not want your
partner to see you doing your physio at first - it is a
hugely personal activity. Over time your partner will
become involved with your daily treatment regime,
they'll become the one to 'gently encourage' you to
get out for a walk & exercise, or get your physio
done. Further down the road, as trust grows, you
may wish to share activities such as going on holidays
together or arrange for your partner to collect
your medicines from the pharmacy, or even prepare
your colomycin (as long as they don't have an irrational
fear of syringes!).
Now, more than ever, people are extending their primary
care giver pool to their partners, husbands or
wives. As commitments are made the "circle of trust"
widens. This brings with it a transition of next of kin
duties & responsibilities to these people - a major
shift in the support network. Your family will be less
involved than you in previous episodes. As your next
of kin, your partner should be there for you whenever
they are needed, and it will be your partner you
will turn to for the support you need to help keep you
going. So on reflection, communication of your
diagnosis to your partner becomes the new memorable
event in having CF, and a milestone in a budding
relationship.
For some couples, despite sharing the care, there
can be a lack of openness about how each one is
feeling, for fear of worrying the other partner. But
when commitment has been made on both sides, at
a certain stage in a relationship, its probably safe to
say your partner has accepted your condition and
has made a life choice to support you through thick
and thin.
As they would be for any couple, healthy or otherwise,
the momentous events such as moving in
together, buying a house, marriage and starting a
family are life changing but living with CF can throw
in a few extra challenges.
Would we be able to apply for a mortgage?
Could we have children?
Would we be able to afford them the loving and caring
they deserve?
The answer to all of the above questions is "Why
not?"
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Adult CF brings a range of health issues affecting
the couple as a unit. The CF teams appear to have
embraced this and are acknowledging the importance
of including the partner in important discussions.
Some couples may need to face making decisions
together about a transplant. The transplant
facilities in the UK provide accommodation for partners
to stay at various parts of the process. It's welcoming
to see how the partner is supported at all
steps and plays a central, pivotal role. During IVF
and ICSI treatment, peoplw with CF have written
that they are comforted by the emphasis placed on
support for the couple throughout the process.
Given that the partner is now taking on a significant
role in supporting the person with CF - what are their
thoughts? How difficult is it to live with CF through
the bad times as well as the good… when it's not
your own? To make it through both the daily grind
and the big issues, it is essential to them that they
know what support to give. Around the world, CF
websites display messages and comments made by
partners of pwcf; it's clear to see that they share
similar concerns as our parents did for us when we
were younger….. does that cough sound different, is
treatment working, will they need iv’s soon, is the iv
working, are they eating enough, getting enough
rest and exercise, and some different questions -
how will life be different after transplant, concern
about carrier testing .....The CF Association has a
section on the community forum where partners can
air their issues and get support from others.
Partners need to be encouraged to contribute to the
Association in any way they can, to ensure that the
needs of pwcf are fully represented. Living with CF
when it's not your own gives you a fresh perspective
on the ups and downs, the ins and outs. Their experience
and their awareness of our needs is an
untapped resource.
As we've grown up, we've started campaigning for
ourselves and now we invite our partners to join in
the effort. A shift in emphasis away from the traditional
family orientated around the PWCF, towards a
person with CF plus partner at the head of their own
family, is needed.
Something to reflect on...
Take another look at the CFAI
logo; can you now tell which
one of them has CF?