This month we had a contest and asked some of our readers, members and volunteers to write a creative peice about What has BYDLS and “the spoon theory” meant to you?
The following essay is one of our winners and was written by Elizabeth DeLouise!

How I Came to ButYouDontLookSick.com and Why I am Never Leaving
In 2003 and at the age of 33 I was diagnosed with Rheumatoid Arthritis, a bilateral disease that affects the joints and can cause joint deformation, along with the ability to affect the lungs, eyes, or any part of the body that can become inflamed. A person can also experience swelling, morning stiffness and fatigue. I had been married for just two months. R.A. is one of those “Invisible Illnesses”, a disease or illness that is not apparent when you look at a person. Not only didn’t I look sick, I looked exactly the same. I was always being told by friends, family, even doctors, “But you still look good” or “You are still so beautiful, how can you be sick?”
When people hear you have Rheumatoid Arthritis they usually go right to the “Arthritis” part, which is a completely different condition. Usually called Osteoarthritis, this is a type of Arthritis that is caused by the breakdown and eventual loss of the cartilage of one or more joints, and is primarily due to aging. I would hear, “Oh, well, I have Arthritis too,” with the unspoken thought next being, “And it’s not as bad as she says” or “But you are too young to have Arthritis!”
It seemed that one of the only people who really understood was my husband, mainly because he too suffers from Invisible Illnesses, and he was a witness to the pain I was in. Whenever I would decline to attend a wedding or shower or family event, or have to cancel at the last minute because of my R.A., the response would be, “Ohh-kay,” with the unspoken thought hanging in the air between us being, “You can’t really be that sick!” or “You just don’t want to come.” It really hurt that the people who were supposed to be my friends and my family didn’t believe me! It was bad enough that I had this horrible disease, but to be going through it all alone was too much to bear.
It really came to a head around Christmas of 2004 when I called up two of my uncles and told them I would be unable to attend Christmas Eve or Christmas Day at their homes out of state. I just couldn’t deal with the drive, and being in pain and completely exhausted while everyone else was having fun was something I just did not want to do. When I told my uncles, their responses were pretty much the same: “Ohh-kay,” with a disbelieving sigh, “Are you sure you can’t make it?” I cried after getting off the phone with both of them. I only saw my family once a year! Wouldn’t I want to come if I could?
My husband was so angry by how upset I was he wanted to call them and tell them how sick I really was. I begged him not to, it would just would make things worse.
I was so depressed about this, and I already had enough to be depressed about! I was venting about this a few days before Christmas on my R.A. support group website, and one of the members replied saying I sounded like I would be interested in www.butyoudontlooksick.com and the Spoon Theory.
When I went there I couldn’t believe what I saw and what I read. First, the Spoon Theory! What a great way to tell my friends and family what it was like to be sick all the time! I also realized that there were so many people who were like me that it was enough for a young woman with Lupus to start a website called, But You Don’t Look Sick? It was like finding my home, and I have lived here ever since!
I first started by sending The Spoon Theory to my friends and family. It worked so well that it started a dialogue with a cousin who had not been speaking with me!
When I saw the Message Boards part of the site I jumped right in and quickly became a Moderator. The people there were so nice and supportive and knowledgeable, and they knew just how I felt being sick and not looking it. They had experienced the disbelief and bewilderment from family and friends. And they had lost some along the way, just like I had.
I have learned so much from being on the boards. So much about my illnesses and about so many others that I had never heard about. It didn’t matter that the illnesses weren’t the same as mine, we were all in the same boat with the issues we faced. I learned how to be a better advocate for myself and how to get the most out of my doctor’s appointments. They also taught me that not everyone was going to understand, even if they read the Spoon Theory, and that I could be okay letting them go. I had a few thousand friends on the board who knew just what I was going through! Being a Moderator, I also learned how to support and help people and that made me feel so useful – that I could make a positive impact in someone’s life, that I could help someone make a change for the better!
At the same time, BYDLS has been there for me as well, and not just for the bad things. Other than my husband, the Message Boards were the first people I told when I was pregnant! (Who else can you tell at 6:00 in the morning?) The Spoonies were with me every step of the way, even giving my son and me gifts and calling me in the hospital. Through the best of times, and the worst of times, they have always been there.
I want to thank Christine Miserandino for the wonderful haven she has created for us, now over 5000 strong. Some people believe that chronically ill people are given their illnesses to help others, and Christine has definitely more than fulfilled that theory if that is indeed true.
Many people tell me that I am very strong, and a large part of that is because I have found a place that I can go to any time I get a new diagnosis, a flare, or have a situation or day that is unique to someone with an Invisible Illness.
Last month I learned that I have Lupus, which is now the most serious disease I have. I am so glad I have my own place to go to, and people who will get me through it with their experiences, support, gentle hugs, and of course, lots of Spoons!
written by Elizabeth DeLouise, butyoudontlooksick.com ©