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What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
A dancer, manager of a weekly goth event, life of the party, and drunk more than not
What would you do if you were not dealing with your invisible illness? *
I honestly don't know. If it suddenly disappeared tomorrow though I'd probably either run for office or work as an advocate for other spoonies.
What would you like people to know about your daily life? *
It's somehow mind numbingly boring and heart attack stressful at the same time. I spend at least 75% of my time either resting/healing or treating my conditions.
What would make living and moving in the world easier for you? *
More awareness and consideration for the difficulties in using a mobility aide, and more patience when my brain just can't find the information someone's asking me for. Basically, people need to be nicer to each other.
Do you have any life hacks? *
I probably have too many, but my biggest one is if I can't figure something out myself I ask for help be it filling out paperwork or figuring out how to get myself up on time in the mornings. It never hurts to get a few different perspectives on a problem, even if it only serves to make clear what doesn't work for you.
What kind of support do you get from family or friends? *
My husband and children do alot to help and support me, though both my husband and son have their own chronic physical/mental health issues, and my mother in law tries but can't quite understand so it gets frustrating. As for friends I have one or two really great spoonie friends in other countries, but there's no one local who's willing or interested in developing a friendship with the sick girl who can rarely leave her house.
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? *
Oh yeah! Most notably my immediate family. I began having noticeable symptoms at 15 and by 16 they'd decided I was faking and refused to take me to any more doctors and began to refer to my health problems as wimp's disease or laziness syndrome. Hence all the self medicating w/drinking in my 20s.
How has your invisible illness affected your relationships? *
It's made them all more difficult. It's like my health creates all these added obstacles to every kind of relationship, from romantic to platonic and even familial. It's 100% why I don't have a girlfriend right now, it's not worth the spoons to try to even find a girl willing to date a married woman.
Is there anything you are afraid to tell people in your life? *
Not like a big secret or anything, but a lot of the time I'm too afraid of upsetting or inconveniencing people to speak up when I need help. I'm working on it though. So far people haven't reacted well.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
YES!!! Some get really irritated & rude while others are so afraid of making me worse they don't even want to do anything to help.
What is your best coping mechanism? *
Distractions! Mostly watching either educational stuff, comedy, or Marvel shows & movies with a few other fandoms thrown in. #whovian4life lol
What are you the most concerned about and the most hopeful for in the future? *
I worry most that I'll miss the early signs of something serious and end up even worse (happened twice already), and I pray daily for effective treatments.
What is your favorite swear word?
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 baby youtube channel and living in a household with multiple invisible illnesses (Fibro, CSID, CTE*probably*, and mental health)
What is the hardest and/or best lesson your condition has taught you?
IDK if it's my conditions or just life but I've learned that everyone has trauma and that even the worst people are no different from anyone else in the fact that their past experiences have shaped who they are now, and that most people are honestly trying to do the right thing we just don't all agree on what it should be and I can and should love those people as the flawed, confused humans we all are.
What is the best purchase under $100 that helped your life
Two Old Goats lotion