Faces of Ankylosing Spondylitis is a website dedicated entirely to the stories of those with AS. Men, women, and children from numerous countries and continents have shared their stories and photos, and we will be sharing some of them here with you with our gratitude to all. You can read all of the stories (there are close to 2,000!) at thefacesofankylosingspondylitis.com
My name is Melissa and I am 24. I have suffered from AS for an estimated five years, though I was only diagnosed two years ago.
Before my diagnosis I was referred to a chiropractor, who spent an hour each session clicking the bones in my back; something that I later found out could have done far more harm than help. After suffering from a sciatica attack which lasted four months and stopped me from walking properly, I went to the doctor and was referred to the hospital for tests. After X-rays, MRIs, blood, and urine samples, I was finally diagnosed with AS and prescribed Ibuprofen and physiotherapy. I attended physio every day for a month, however had to leave the program early to embark on my first master’s degree. I am only now being referred to a rheumatologist as my files were apparently mixed up, but hey, two years late is better than never!
When I was first diagnosed with AS I felt incredibly relieved to finally have an answer for so much pain, however on realizing how complex and potentially awful the answer was, I became quite bitter and resentful. It took me a long time to find happiness again knowing that I would find it very difficult to do all of the things a normal girl in her twenties could do. Watching my friends pull off extravagant dance moves and sit cross-legged on the floor drove me to despair, knowing things as little as running up the stairs were virtually impossible for me. Hobbling up one step at a time and trying to find the comfiest looking chair in the pub to watch my friends dance became my depressing lot in life for months. However I finally began to accept that AS was real, and I had it, and I realized slowly that moping would not change that. I finally overcame the depression, admitted that I was never much of a dancer anyway, and promised myself that I would start living again.
I’m now feeling much better within myself. Through exercise and various tricks of the trade my movement has improved and pain has reduced. I’ve just completed my second master’s degree and currently work in a school, which I feel is a perfect career choice given the lack of strenuous physical activity required to complete my job. On an average week I complete various stretching activities, prone-lie for at least an hour, go to bed every evening with hot water bottles pressed to my back, and attempt to swim or go to the gym as often as possible. In the New Year I intend to create a monthly video blog regarding living with AS in the hope that it will bring recognition and help other sufferers.
There is not a day that goes by that I am not in some form of physical pain, but there is also not a day that goes by that I do not overcome it. AS is a horrible affliction, one that creates an old temperament in a young body, that shackles movement to pain and requires constant optimism to achieve even basic tasks. AS has made me stronger than I ever thought possible, it has given me the determination to succeed and is responsible for my stubborn optimism; and so in the midst of all the pain and ache and stiffness, there is always some light to be found in the dark.
"It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect."
Creator of Faces of AS, SAA Member, and Face 0062
PO Box 5872
Sherman Oaks, CA 91413
(800) 777-8189 U.S. only
or (818) 892-1616