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3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 11/16/2009 11:13 AM (GMT -6)   
I just want to put this out there and get some feedback from those suffering from Lyme
 
I was diagnosed with Lyme disease in June this year, and since than I have been struggling to recover.  It seems sometimes we have to travel down a road to really understand.  Before I had Lyme I was ignorant to the illness and issues surrounding it.  Now I can say I get it when other people describe how they feel and I now know that this issue is bigger and more debilitating than what is being broadcasted to the public.  And ignorance breeds from not knowing.
 
With that said, I'm a photographer and I have been taking classes to get a degree in art.  I have decided that I want to apply for a grant to do some research on Lyme Disease.  My idea is to do a photo journalist approach to Lyme and bring awareness.  I plan on doing research to add to my proposal, and I would need to photograph people who are suffering from Lyme. 
 
As a person with Lyme how would you feel about someone wanting to do a photo piece on you, really get the message out of how debilitating Lyme can be and bring awareness.  Would you feel uncomfortable having someone invade that part of your life?  My thoughts are to find atleast three people to do my piece on.  I would like the three people to be in different stages of the disease.  I also want to photograph a deer tick, yes, I'm willing to hunt one down and include it in my essay. 
 
Please give me your feedback, I'm open to any suggestions regarding my project. 
 
Regards,
 
 

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/16/2009 12:27 PM (GMT -6)   
3whiteroses,

I think your idea is an interesting one. In my limited experience, one of the problems many of us face with having Lyme and being so sick is that we don't look sick. There are some people who do (see "Under Our Skin") but I think that's an exception. When people I know hear I'm not doing well (not that I make an issue of it, but because I'm begging off of some expectation or other) they always say "well, you LOOK good." To me that is irrelevant, but to them it is inconceivable that I could be so sick when I don't look sick (or for that matter I don't act sick either). The same is true for my local friends who have Lyme. I wish you luck in finding some people with Lyme who would make good subjects for your project.

Rose
I have Lyme; it doesn't have me.


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 11/16/2009 12:46 PM (GMT -6)   
Willowrose,

I understand exactly what you are saying about not looking sick, but feeling sick. My vision is to have three different people who are in different stages. I would like one in a wheelchair (if I'm unable to find someone I will think of something different), I would like another person who has an IV line, and another person who does not have anything. I'm okay with someone who does not look sick, that is the point. There are ways to photograph the illness and get the point across. The use of light will be critical. I also plan on photographing medications....I know I have a lot of stuff to take each day and I believe there are others who take more than me.

I really feel that this is important and I may have some bumps in the road along the way, but I believe in my heart that I can really capture Lyme with my camera.

JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 11/16/2009 1:48 PM (GMT -6)   
I agree with Rose, although lately the bags under my eyes from crying aren't cute or the red patches I've developed. Other than that I don't look too sick. However I think it's so important to get the message out there. Another thing is maybe to catch the family that is impacted. I'm a single mom and my 2 sons are impacted greatly and I feel they aren't as happy as usual because I've been going through a really hard time. To catch that side of it... There are so many of us that can't do with and for or family like we wish.
“You must be the change you wish to see in the world.” -Gandhi

http://lymeactually.blogspot.com/


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 11/16/2009 3:53 PM (GMT -6)   
Wow, I really like your idea Jenn. Lyme isn't an individual's illness; it affects everyone in our lives. I think it is particularly difficult for those of you who have children at home. Seems like that could make for some pretty intensely sympathetic photography, too.

Rose
I have Lyme; it doesn't have me.


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 11/16/2009 6:27 PM (GMT -6)   
Jenn
 
Thanks for you input - that exactly what I need.  As I see it this project will start out one way and hopefully evolve.  I need to write a proposal - I have a few months to get all my  ideas and thoughts together.  I feel like I have this one chance to make some difference and I want to do it right! 
 
Including family can be very powerful part of this project. 
 
I do want to bring up one point...I was told the same thing when I first got lyme disease that I looked fine.  But as my symptoms started to improve,  someof my friends told me that I looked much  better.   So on some level I think we do look ill just not to a degree of say someone with a terminal illness. 
 
This is extremely important project, and please if you read this give me your feedback.  I think feedback from those who suffer from this disease can be beneficial.  There may be some suggestions that I have not thought of, a different way of looking at it. 
 
Regards,
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