What is your disorder? *
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
I had so much more energy
What would you do if you were not dealing with your invisible illness? *
I think I would have been more engaged in the world around me
What would you like people to know about your daily life? *
Post-hysterectomy it is so much better than before. I did normal daily life before, but it was hard some days especially when I was dealing with neuropathy
What would make living and moving in the world easier for you? *
Do you have any life hacks? *
I had some hacks for dealing with pain like meds and stretches and resting in a dark room
What kind of support do you get from family or friends? *
People to talk to mainly and help from my husband when I wasn’t always up to tasks/child issues
Have you ever had someone not believe you have an invisible illness because of your appearance? *
No, because I didn’t really tell people about it, so no one knew
Has this been a positive or negative experience? *
Positive now that it’s resolved. Very negative before
How has your invisible illness affected your relationships? *
It stresses things occasionally when I am feeling pain and low energy so often at home
Is there anything you are afraid to tell even the people closest to you? *
Does the fact that your disease is invisible change how healthcare professionals treat you? *
Yes. I had to push HARD for a hysterectomy with multiple doctors.
What is your best coping mechanism? *
Reading, coloring, spending time alone
What are you the most fearful of and hopeful for in the future? *
No fears. Hopeful for more energy to engage in life and not feel like everything is too overwhelming to accomplish
What is your favorite swear word?
Fuckers (applicable in 2017 in particular)
Is there anything you *don't* want to talk about? Is there a subject we should avoid during the interview? *
Nope! Everything is fair game:)
What is the hardest and/or best lesson your condition has taught you?
To advocate hard for yourself. Don’t stop pushing for answers and action from doctors.