The winter after I was diagnosed with rheumatoid arthritis was one of the hardest for me. Living in New York City can be brutal no matter the season, but what made that winter even more difficult was the fact that because my disease was practically invisible; no stranger ever came to my rescue to open a door I couldn't push open or to give up a seat on the subway. It didn't matter that I was sick as a dog; I looked like the picture of health.
Fellow New Yorker and photographer Jodi McKee felt the same way. After being diagnosed in 2008 with RA, Jodi experienced the same feelings of frustration I did. "There are designated seats for disabled persons in every car," she explained, "But how do you explain to someone that even though you look completely normal, you really, really need to sit down? I usually stand and grip the pole and will the train along faster to my stop, even though my feet are killing me and my hand is hurting more and more from holding on."
And then inspiration struck; Jodi decided to use her passion for photography to shed light on the many young, "healthy-looking" people out there living with autoimmune diseases, including RA, and thus, the Autoimmune Portrait Project was born.
I got to know Jodi this spring through my blog and a Sick Chick Club and was lucky enough to be included in the project at its inception. I thought it was such a great idea that I wanted to share Jodi's inspiring story about the Autoimmune Portrait Project with all of you here.
Read below for my recent interview with Jodi:
S: When were you diagnosed with RA, and how did it start for you?
J: I was diagnosed some time during the summer of 2008. My treatment actually started with a severe case of scleritis in March 2008, which led to many, many tests to determine the underlying cause, which turned out to be RA. The scleritis was incredibly painful, but I am grateful for having a sudden onset that led to a relatively fast diagnosis of RA because it got me on the right medications quickly.
S: What were some of your first thoughts and reactions to finding out you had RA?
J: Relief. After the scleritis, the doctors ran so many tests, but none of them were conclusive. I was so nervous not having a name to put to my condition and scared about not having a plan of attack. My rheumatologist tried to be optimistic by saying that it was better to not definitely have RA or lupus or hypothyroidism or whatever. But the not knowing really got to me.
S: What does your treatment plan include, and how is it going so far?
J: When I was still being labeled as Unspecified Autoimmune Syndrome, I went to see an acupuncturist who was really great. But I was feeling so overwhelmed by my lack of diagnosis (and the fact that his office didn't take my insurance), that I stopped going. Aside from that, I am lucky to be married to a licensed massage therapist who does shiatsu on me once in a while. Aside from those alternative treatments, I am definitely on the Western medicine prescription drug track. I am currently taking Humira, Methotrexate and Indomethacin. Once in a while I'll have to stop one of them for some reason and the pain comes back, so they must be working, even if I don't always feel so great.