This document discusses Nikki Estanol's experience living with rheumatoid arthritis. It contrasts her reality of living with a chronic illness against expectations. It highlights how losing insurance and medication impacted her Friday nights. It also discusses the need for more accurate representation of arthritis patients beyond typical commercial depictions. Finally, it outlines principles for guiding patients to be engaged in their healthcare and encouraging collaboration between patients and doctors.

1. NIKKI ESTANOL
RHEUMATOID ARTHRITIS
@chronicchill
nikki.estanol@gmail.com

2. Moulin Rouge starring
Nicole Kidman as Santine,
dying of Tuberculosis in show
Everyday starring
Nicole Estanol as me,
dying of boredom in bed
expectations vs. reality

3. high school

4. a “normal” high school student
family school work

5. “I’m fine and healthy!”

7. expectations vs. reality
FRIDAY NIGHT

8. lost insurance and
medication
2010:

9. A Night Out With RA:
cute clothes, tattoos and canes

10. “What do I
do now?”

11. typical silver-fox patient
arthritis pain commercials
(aka not me or my #spoonie friends)

12. www.tumblr.com/tagged/enbrel

13. My Immune System Hates Me
(A Youth Support Group For Rheumatoid Arthritis - #mishm)

14. “TNF, seronegative…”

15. coming out of the ra closet

16. #MISHM: Project I Don’t Look Sick

18. Our Guiding Principles:
To guide patients and caregivers to be actively
engaged in their health and health care experiences.
To guide health professional practices where patient
experience and contribution is an integral goal of
excellence.
To encourage mutual collaboration among patients,
health professionals, caregivers and others allowing
them to partner in determining care.

19. doctors and
ePatients as
co-drivers

20. THANK YOU!
@chronicchill