Attitude, the Gateway to
Originally published in Youth Allied By
CFIDS, Fall 1997
Because of our familyís recent move from
the Chicago area to the Portland, Ore., area, our 18-year-old daughter, Alisa,
and I had many final appointments with doctors and school people who had worked
with us during the past nine years of Alisaís illness. In addition to gathering
a stack of prescriptions, referrals and recommendations for Alisaís transition,
we also reflected with these key people about their interactions with us and
thanked them for their part in bringing Alisa to the point sheís at now. I guess
because we were leaving, several of them felt free enough to put down their
professional personas and be vulnerable with us about our interactions with
We learned a few things.
We learned that parentsí attitudes are the
gateway to services.
We learned that respect
goes further than rudeness. One doctor said that he had appreciated
our attitude of working together and of our respect for each other: our respect
for his skill as a professional; his respect for our experience as parents of a
chronically ill child. This man, the head of pediatrics at a teaching hospital,
confessed that he was frustrated with some of the parents of his CFIDS patients
because they were caustic and demanding. He said that he often felt as if they
saw physicians as their "lackeys," dictating what the medical people must do for
We learned that
professionals appreciate it when parents have done their homework.
During the nine years that this doctor had directed Alisaís care, we had not
been passive. We often came to him with research articles about new treatments
or tests. We discussed many things with him. But because he never felt that we
would demand him to act on everything we brought to him, he was open to reading
the articles and discussing the issues with us. He chose to act on many of the
On the school side, Alisaís guidance
counselor, who had been through many nightmare scenarios with parents in his 25
years of experience, always appreciated the information, background and contacts
we would contribute to the schoolís ability to provide for Alisaís educational
needs. When Alisa entered high school, this counselor had never heard of CFIDS.
But through our discussions, we became co-learners, co-workers, on the same
team. We helped him do his job: ensuring that Alisa got a quality education even
though she could not be in school full time; he helped us do our job: ensuring
that Alisa got a quality education during four years of severe
We learned that
professionals need to see progress as much as parents do. Every
three or four months, whether or not we had appointments with the professionals,
we gave them an update on Alisaís situation. For four of the nine years of
Alisaís illness, her situation worsened. These professionals walked with us
through some horrendous times. But whenever her situation improved, we made sure
that the doctors and the school knew. They needed to see the good times, too.
They needed to see the results of their efforts. When Alisa had her final
appointment with her pediatrician, she said to him, "You saved my life. If you
had not followed your instincts and sent me to the specialists that you did, I
would not be here today. Thank you."
Please donít misunderstand what I am saying
here. Iím not trying to hold up our family as some kind of model. Many families
have found these ideas to be true for themselves too. Iím also not trying to
suggest that we should sacrifice our childrenís needs to maintain positive
relationships with their care providers. We need to work to get services for our
children. Sometimes we need to fight to get those services. But letís not go
into situations with our boxing gloves on. I like what another mom (herself a
PWC) said about advocating for her child with CFIDS: "I donít pick a fight with
people who can provide services to my child, but I must never be afraid to put
up a fight if thatís necessary." Thatís the balance.
In our drive to get services for our
children, letís not forget to be respectful, gracious and grateful.
Iím really writing this article to myself.
Next week I start the daunting process of trying to find replacements for the
six doctors who were treating Alisa. I need to remember everything Iíve written
here. This move has been stressful, and as a result, I have very little patience
left. I am tempted to sit in the doctorsí offices and say, "Look, letís save
everybody a lot of time, here. Iíve been at this for nine years. These are
Alisaís needs, and this is what you need to do to meet them. Trust me, I know
what Iím talking about." But I canít say that. And I wonít. I must remember that
I am one of the significant gateways to the care Alisa will receive in this part
of the country. My attitude matters.