Do We Look Sick to You?

I think what you are doing is so great and it hits home for me being 29 and living with R.A and I am sure alot of people are going to feel the same. I wish I had the money I would love to come there and take place in something I know will help us to remember that we are not alone and to help others understand that just because we arent in a wheel chair or we dont walk with a cane doesnt mean we dont hurt. I would love for more people to understand what we go through and how hard things can be for us. I go in the pharmacy to fill all my meds and people look at me funny and treat me like some kind of drug addict all because I get pain meds and that is so unfair to judge us just on what they may see on the outside. I really hope you keep up with this because this is so great and I wish you all the luck!!

I reallly liked the idea of putting up these smiling faces of the silent sufferers. It could also be called the potraits of "brave people" or "Those who never gave up".

Best of luck with your project.

Ratnapriya

What a great project and a terrific interview! 

I think it is a super idea.  Like most of us, I look normal.  No one can tell the excruciating pain I am in, that I can't push open the department store door or punch the locker buttons at the yoga studio because my fingers won't work.

I am also a photographer but put the camera down when the RA came.  You are so right, the depression that has come with the RA has wiped out all my creativity/motivation to pick up my camera.  I live in the mountains where my fingers freeze stiff if I try to shoot outside in the winter.  I sincerely hope to get that part of me back.  I miss my creativity.  Would love to be part of the project in Canada!

Thanks for the interview and kudos on putting a face on this disease.

Jamie

I have the same difficulty dealing with how I feel verses what I look like.  I'm getting better at finally surrendering to my own limitations, not trying to do everything and being angry at myself for not being able to.  But, I still deal with, and probably always will have to deal with, other people not seeing my limitations.  When someone asks me if I can, say, close that lock, and I say no, they are offended.  They assume I choose to be lazy or not helpful, when really, I can not physically.  Then, I have to explain... "blah blah RA".  Then, the "you're too young to have RA", then "that's what I told the doctor, har har har", then "Well you don't look sick".  Always the same conversation that I would really like to avoid.  And, in my mind, I think "I don't look sick yet, but you wouldn't believe what my body is doing to itself right now.  Give it a few years, it will start to show".  Sometimes, I wear my wrist braces even when I don't need to just as a way of explaining myself without actually having to say anything.

Also, there is no reminder for people of my limitation.  If I looked sick, people wouldn't forget that my daily number of steps are limited and precious.  And, they wouldn't forget that while they are disappointed that I can't do more, I am congratuating myself for the small amount I did do.  If I looked sick, I wouldn't always feel like I was being judged for my actions or the need to defend them. 

A few weeks ago, I was walking down the sidewalk with a friend who has lyme disease.  I'm 25 and she's 27.  I asked her if she was in pain right then, and she said with every step she took her hip popped in and out and that her back was burning like she'd gotten a sunburn.  She asked me if I was in pain and I told her I felt as though someone cut open my feet and filled them with crushed glass.  And, here we where walking with a hundred other people who had no idea we were anything but young friends strolling along without a care in the world.  I was both comforting and sad.

I wish there was a way to communicate what RA is and it's presences just as a matter of fact, without sympathy, pity or expectation.  I hope that through portraits, you, Jodi, will be able to find away to show this complicated state.  Best of luck!