Have you read the first part of Kathryn’s interview? Check out This Honest Mom Doesn’t Want You to be Ashamed of Your Rare Disease.
“Moving to the west coast has been so funny; I had my people, my team back east. We had a clear short hand and I was blessed that a few physicians gave me their personal cell numbers. I’d text them and hear back immediately.”
When Kathryn and her family moved west she was anxious about having to develop a new team. Amazingly, one of her physicians from NIH happened to move to Santa Barbra at around the same time.She has made more than a few hospital trips since then. She’s had a couple bad episodes with POTS and has needed to get hydrated. She also had a very bad case of strep throat.
She had chaperoned on one of her children’s field trips and just 24 hours afterwards, her throat was hurting terribly. Forty-eight hours after the field trip, she said she had to go to the hospital. Upon arrival she told the doctor that she had strep throat. Her doctor looked at her and said, “I really don’t think you have it but people like you, with chronic illness, always get me. You know your body better than anybody else. I think it’s one thing and it’s something else. So we’ll a do a test.” The test came back positive and her doctor remarked, “You guys are pretty good diagnosticians.”
Kathryn has encountered doctors who don’t really know what fever syndrome or urticaria is. One thought it must be similar to the common cold. Kathryn commented that he was well credentialed, but he’d just never heard of it.
“I try to be very open but I never want to be a know-it-all to my doctors. Even if I know everything I know about some things, there are things that I don’t know, that they know. I try my hardest to partner with the doctors; to be friendly or like colleagues almost. I do not want to be the difficult patient because it’s very possible I’m going to wind back up in the ER or wherever I am again and I don’t want the staff to have the reaction of ‘Oh gosh it’s her again.’ I want to portray that, ‘I’m the happiest person you’ll ever meet but I’m in trouble right now.’ Having a diagnosis makes it easier to communicate with doctors than being undiagnosed, and when I can’t speak my husband is a wonderful advocate.”
“Doctors work really, really, hard. Ninety-nine point nine percent of them are amazing people, just like one percent of patients are obnoxious; it’s the same with doctors. I keep in mind that I don’t know what they faced in the curtain next to me, but I’m assertive if I don’t think I’m getting the care I need. There’s nobody working harder in an urgent care than nurses. I make sure to say thank you to them; they often have a thankless job. The nicer you are with the people you come into contact with, its amazing how far they will go out of there way for you.”
Kathryn said that many people have found great doctors through patient recommendations on Facebook, of all places. “I can’t say enough great things about Facebook. People have helped me to find [individuals] who are smart and better educated than I am about my illnesses.” She also said, however, that it’s good to find a balance with social media. “Don’t fall down the rabbit hole of not staying positive in a support group. No one is going to say life isn’t really, really, hard, but that mentality can be really limiting.”
This type of awareness is evident in Kathryn’s approach to many things. She keeps an open, trusting, relationship with her health professionals and acknowledges all aspects of her health.
“I have always had someone on my medical team that is a mental health professional from when I first got sick to this day, and I feel that person is so integral. I have a two-day rule; if I get bad news or really don’t feel well, I have two days where I’m in bed. Not because I’m in a flare but because I’m blue; it’s chocolate and Netflix and ‘woe is me’ and then on day two, I need to shake it off. If I can’t, then I call my mental health [doctor] and say I need help, I can’t shake this. I think a lot of people suffer in silence for the mental aspect of their illness.”
“It’s so important to have a mental health component on your team who knows you. I also have a spiritual advisor, that’s my team. When you can say to your doctor ‘listen, my mental health is rock solid right now, this is a medical issue because of xyz’, it helps to refocus the light on the issue at hand. Early on, I went to a doctor and said ‘I don’t have the energy I used to, something’s not right.’ And I got told ‘Well, you have two kids and you’re not 23 anymore.’ I was furious. The times that I have struggled with the mental side of things, I’ve gone and talked to my mental health professional. I put my money where my mouth is.”
