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.
S: What has been the hardest thing that you struggle with, then and now?
J: In the beginning, the hardest thing was just not knowing what was wrong with me. Now, the hardest thing is letting myself rest when I need to and trying not to feel guilty about it.
S: How did you get started in photography?
J: I think I've always been a photographer. I recently came across a photo of myself from Christmas when I got my first camera. I was six. I've been snapping photos ever since. But I think I shifted from just taking snapshots to trying to do something more around 2004. I specifically remember a gorgeous spring day when I purposely went out to take photos, instead of maybe just taking some photos because I was out and about.
From there, I had a small show at a coffee house in Indiana. After moving to New York, I took a class at the School of Visual Arts. I find New York incredibly inspiring and have fun losing myself in the city and snapping away.
S: Has RA ever interfered with your photography?
J: Yes, it has. I often meet up with fellow photographers from Flickr to go on photo walks. I haven't had as much energy to do that since being diagnosed with RA. Or if I push myself and go, I often spend the next day completely useless on the sofa.
Lately, my hands and wrists have been bothering me, which isn't exactly conducive to wanting to pick up a camera. And I have been having a lot of trouble with my feet over the past couple of months, which makes it difficult to walk around the city. I also find that the depression that accompanies RA has hindered my desire to push myself creatively.
I try to take advantage of good days and get out and shoot when I can. Sometimes, just getting out the door is half the battle.
S: How did you come up with the idea for the Autoimmune Portrait Project?
J: I had been discovering all of these great RA blogs and wanted to contribute to the online collective that has been forming. I love that we are able to connect and share our stories and frustrations with each other through this amazing medium... My husband encouraged me to find a way to incorporate photography. I started with the idea of taking portraits of people with RA, but I wanted to make it more than that. I have several friends who have fibromyalgia and some others who have other autoimmune diseases. I didn't want to exclude anyone. Really, I wanted to show the world that plenty of people are suffering with some sort of invisible illness.
S: What is your vision and hope for this project?
J: My hope is that I can let everyone know that there are a lot of younger people like me out there who are dealing with these chronic, often painful, illnesses. But the more I think about it, I think it is even more important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not alone. That the perfectly normal looking stranger next to them on the bus or at work might be suffering right alongside of them.
S: How have people responded so far?
J: The response has been wonderful. Aside from the positive feedback on my blog and Flickr, I have had a number of e-mails from people who want to participate. The only problem is that I have no budget to travel and all of these people are spread out around the country. I've even had a few responses from people in Europe and Australia. I would absolutely love to travel the world taking portraits. If only!
S: Where can people find the portraits?
J: The main site is jodimckeephotography.blogspot.com. It's still a little bit of a work in progress, but it's getting there. You can also find a set for my portraits on my flickr page: http://www.flickr.com/photos/jodimckee/sets/72157621983256946/
S: How can people get in touch with you or become part of the project?
J: Anyone interested in participating in the project can e-mail me at jodimckeephotography @ gmail.com. If people are interested in participating, please contact me. Even if we can't meet right away, I am hopeful that we will be able to meet someday! And if you are ever in New York City, please let me know. I would love to take your photo!
Sara is the author of the blog, The Single Gal's Guide to Rheumatoid Arthritis and a partner in the Buckle Me Up International Young Arthritis Awareness Movement.