Attitude, the Gateway to Services

By Lynn Vanderzalm

Originally published in Youth Allied By CFIDS, Fall 1997

Because of our family’s 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 Alisa’s illness. In addition to gathering a stack of prescriptions, referrals and recommendations for Alisa’s 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 she’s 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 them.

We learned a few things.

We learned that parents’ 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 them.

We learned that professionals appreciate it when parents have done their homework. During the nine years that this doctor had directed Alisa’s 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 suggestions.

On the school side, Alisa’s 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 school’s ability to provide for Alisa’s 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 debilitation.

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 Alisa’s situation. For four of the nine years of Alisa’s 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 don’t misunderstand what I am saying here. I’m not trying to hold up our family as some kind of model. Many families have found these ideas to be true for themselves too. I’m also not trying to suggest that we should sacrifice our children’s 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 let’s 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 don’t pick a fight with people who can provide services to my child, but I must never be afraid to put up a fight if that’s necessary." That’s the balance.

In our drive to get services for our children, let’s not forget to be respectful, gracious and grateful.

I’m 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 I’ve written here. This move has been stressful, and as a result, I have very little patience left. I am tempted to sit in the doctors’ offices and say, "Look, let’s save everybody a lot of time, here. I’ve been at this for nine years. These are Alisa’s needs, and this is what you need to do to meet them. Trust me, I know what I’m talking about." But I can’t say that. And I won’t. 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.

A lot.