Invisible Not Broken - Chronic Illness Podcast Network

“The reminding part can be absolutely exhausting. When you feel like you’re talking to a brick wall (parenting with chronic illness)” — Vanessa My Silly Billy, Squeaky Cheeky, Floppy Poppy Family By Vanessa Jean Locke

 

Disorder Info

Name *Vanessa Jean Locke

Age * 44

What is your disorder? *

Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes)

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

11

Who were you before your illness became debilitating? *

I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.

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

Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!

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

I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.

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

Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.

Do you have any life hacks? *

When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.

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

Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.

How has your invisible illness affected your relationships? *

I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.

Is there anything you are afraid to tell even the people closest to you? *

Big question. I’m not sure I’m ready to answer.

What is your best coping mechanism? *

My mind.

What are you the most fearful of and hopeful for in the future? *

Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children.

What is your favorite swear word?

SHIT!!!

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.

My Instagram page and Facebook page

Any questions you think we should add to this list?

What’s the hardest/best lesson your condition has taught you?

Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.

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