Invisible Not Broken - Chronic Illness Podcast Network podcast

September 29, 2019 Interview: Author Kathryn Trueblood About Her Book: Take Daily As Needed, Crohns & Graves Disease, & Parenting With A Chronic Illness

Trigger Warning: In our discussion we discuss: PTSD, Depression and suicide

Suicide hotlines

International Hotlines

1-800-273-8255 National suicide prevention hotline with messaging

Resources

The Red Badge Project

Website/Blog, Twitter, & Instagram Handle

https://kathryntrueblood.com/

Name *

Kathryn Trueblood

Disorder Info

What is your disorder? *

Crohns Disease and Graves Disease

At what age did your disorder become a daily issue? *

Who were you before your illness became debilitating? *

An over-functioning wife of a depressive man while raising two children with special needs and teaching full-time as I climbed the career ladder and maintained the family's health insurance.

What would you do if you were not dealing with your invisible illness? *

Go hiking and backpacking and dancing.

What would you like people to know about your daily life? *

Even though I manage the regular workweek (in part because I can work from home when I am not teaching), I spend every weekend out of remission and/or in pain. Then it is time to get up and do it again Amen.

What would make living and moving in the world easier for you? *

The ability to work part-time.

Do you have any life hacks? *

Yes. In your day planner, write down anything you do that is restorative to you as an appointment, be it a pedicure or a yoga class or a walk with the dog. Use your initials, if you like. That way, you won't give away your time for yourself. When people look over your shoulder, they see that these spots are already spoken for, and don't start suggesting times and dates. Same goes with your Outlook Calendar.

What kind of support do you get from family or friends? *

My husband will always rub my back, even in the middle of the night. He is the most compassionate person I know. My best friend will talk through anything will me and she takes me to any procedures or surgeries I need when my husband is our of town.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I have had colleagues express anger, resentment, and envy when I was on a part-time medical leave. I've heard them say, "Well, you look fine." One colleague actually said, "Well, if it's not one thing with you, it's another." That one stayed with me.

How has your chronic illness affected your relationships? *

When I am out of remission, I tend to isolate myself. Partly because I am exhausted and partly because I don't want people to see me when I am ill or in pain. In my last work promotion file, I was very candid about why I had two part-time medical leaves and how illness has affected my outlook. I began working with veterans after my illness in 2007, offering them storytelling workshops through The Red Badge Project because I felt their isolation and I believe in the healing power of telling stories. My illness has made me willing to be vulnerable and candid with people, to sit with their pain, and vets love dark humor.

Is there anything you are afraid to tell people in your life? *

Yes, that when I get worn down by pain, I sometimes think about jumping off the Deception Pass Bridge. It is more a fantasy than a plan, but in the fantasy I perceive that moment as very liberating, to leap into the air and be carried by the tides. Just so you know, I have had two immediate family members attempt suicide and I would never inflict that kind of pain upon my loved ones, nor would I want to increase their likelihood of making an attempt later in life.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

I don't think so. I have a pretty solid team.

What is your best coping mechanism? *

Meditation, yoga, and soft-serve ice cream. Having a session with the family dog!

What are you the most concerned about and the most hopeful for in the future? *

I am very concerned about the lack of social services and healthcare for so many who are suffering from chronic illness in this country. I am hopeful because Americans are innovators and I believe we can turn global climate change around. I believe in the kindness of people because my experience has shown me that most people are kind.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd like to talk about parenting while chronically ill, from the children's perspective as well as the parent's. I was inspired to write the book because I could not find what I felt were honest representations in fiction or non-fiction.

What is the hardest and/or best lesson your condition has taught you?

The hardest? I could no longer use my tremendous will power to over-ride my body. I had received an overdue notice from God (!), and it was time to pay attention. The best? How deeply love abides, how durable it is.

What is the best purchase under $100 that helped your life

A Samsonite business case on wheels.

Any questions you think we should add to this list?

How do the protagonist's children respond to her diagnosis of Crohn’s disease? Do their coping strategies change throughout the book?

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