What is your disorder? *
SLE Lupus, Fibromyalgia, Hepatitis B, Neurological Functional Disorder, Stroke
At what age did your disorder become a daily issue? *
12
Who were you before your illness became debilitating? *
Youth Worker
What would you do if you were not dealing with your invisible illness? *
An active member of the community Urban Vision, while being a Youth Worker
What would you like people to know about your daily life? *
My health is not reliable (i have good days but bad, I get sick easily and fatigue levels can come and go without warning)
What would make living and moving in the world easier for you? *
Being able to work from home (Which I started this year) Also not having illnesses
Do you have any life hacks? *
Stay Positive, even when it's hard too
What kind of support do you get from family or friends? *
Emotional, Love and travel
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've had strangers who want me to move so they can sit, (when I don't take my walking stick, which I only use when I'm tired and Lupus is flaring up).
How has your invisible illness affected your relationships? *
I can't commit to doing everything and anything
Is there anything you are afraid to tell people in your life? *
Nope, I try to be honest about my life as it's been filled up with challenges
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes, my careers hours has been dramatically decreased, and travel costs are no longer part of my career taking me to appointments and regular blood tests when I am sore and tired we have to walk.
What is your best coping mechanism? *
laughter and surrounding myself with loved ones
What are you the most concerned about and the hopeful for in the future? *
That I get seriously sick
What is your favorite swear word?
Fucking Hell
What is the hardest and/or best lesson your condition has taught you?
It's ok to put yourself first, so you can be there for others
What is the best purchase under $100 that helped your life
meds