Website/Blog, Twitter, & Instagram Handle
What is your disorder? *
Autoimmune mediate small fiber neuropathy secondary toundifferentiated connective tissue diseaseendometriosis At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
Oh gosh this question always get me upset I was extroverted, lively, vibrant, the go to person to have an adventure or a good time.
What would you do if you were not dealing with your invisible illness? *
starting a family
What would you like people to know about your daily life? *
how difficult every part is despite what you see
What would make living and moving in the world easier for you? *
people being kinder and more understanding
Do you have any life hacks? *
I always have a note book cause i forget everything (something that was never a problem, I had the best memory pre illness)
What kind of support do you get from family or friends? *
varies I think everyone in my circle does their best to support me in the ways they know how many of them not realizing how harmful they can be at times
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 yes! my boss at work for almost a year and that made it so my colleagues didn’t believe me and made working still to this day very difficult
How has your chronic illness affected your relationships? *
i have lost a lot of people in my life because of my illness
Is there anything you are afraid to tell people in your life? *
oh yeah most of the time afriad to tell them how bad it really is or how much they effect me in a negative way
Does the fact that your disease is invisible change how healthcare professionals treat you? *
yes it took several doctors to believe something was physically wrong with me ase my tests would come up negative but my symptoms were so strong. they only cared about the tests
What is your best coping mechanism? *
creating RARE. my brand
What are you the most concerned about and the most hopeful for in the future? *
That this will be the quality of my life from this point on, that i will never love my job the way i once did, I am a therapist and now its so hard to have al i have going on and be present for people
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 brand RARE. which has been my coping skills through out this and it really has given me my voice and something that I hope to give to others
What is the hardest and/or best lesson your condition has taught you?
everyones fighting a battle you know nothing about, so be kind, be . patient be that RARE. human who asks if everything is okay rather then pass judgement
What is the best purchase under $100 that helped your life
my weight zebra that can be heated or cooled!
Any questions you think we should add to this list?
how anxiety/depression etc tie into chronic illness
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