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More Than A Spoonie Blog

Young People With Chronic Illness

Audible

Adam Ruins Everything

Uniqlo Bras and Bra Tops

Victoria Jackson

Favorite Podcasts

SickBoy

Stuff You Missed in History Class

Lore

Joe Rogan

Deal With It

Myths and History

 

What is your disorder? *

Neuromyelitis optica, depression, adrenal insufficiency. Nmo is similar to MS

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

4

Who were you before your illness became debilitating? *

A funny sarcastic independent little girl

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

I would’ve been finishing high school

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

Everything is exhausting.

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

Better options to help relieve symptoms

Do you have any life hacks? *

Yes! 1. water bottles 2. towels dressing gown 3. homeschooling

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

I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.

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 can’t remember an example. But people are always very impressed thanks blind because I manage well

How has your invisible illness affected your relationships? *

I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.

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

That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.

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

No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.

What is your best coping mechanism? *

PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂

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

I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.

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.

How this affects my mental health, and of course my work as a patient advocate.

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

The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.

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

My heated blanket! It’s like a full body heating pad. Only about £25 amazon.

 

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