I think Ankylosing Spondylitis should be called “The Sleepless Disease” because I miss sleeping so much. I miss laying in a bed and sleeping for 8 hours. I feel depressed when I hear someone say “I’m going to sleep in, in the morning”…knowing I haven’t been able to sleep more than four hours at a time in the past 5 or 6 years. Maybe it should be called “The recliner disease” seems most nights I can’t even lay in a bed because the pain and stiffness is so severe. I guess my last idea for AS to have a new name is “The Suffering Disease” seems that’s what life with this disease is, endless suffering. Hi. My name is Mandy and I have Ankylosing Spondylitis. I remember having episodes of back pain and severe tailbone pain even as a young child but in my mid twenties things became more than bothersome. When I was pregnant with my second daughter at the age of 25 I was diagnosed with siatica after having many episodes of struggling to walk, putting pressure on my legs became excrutiating. It seemed my pain would last for a week or two then go away for a week or two only to return again. After I gave birth to my daughter Autumn, the pain didn’t go away like the doctors thought it would it just continued and became more frequent and more severe. By the time I was pregnant with my third daughter at age 30 I was more than a mess. I was in tears trying to walk and put pressure on my legs, my tailbone hurt so much when I would try to stand up that I would have to grit my teeth to keep myself from screaming. My pain continued after having my daughter Kara, and after many epidsodes that were now lasting almost a month now of worrying how I would walk my oldest daughter to the bus stop because I could barely walk and crying struggling to walk to our bathroom I knew something was very wrong. Thinking back…. I grew up watching my Dad in pain, so much pain in his back I would see tears in his eyes. I knew he never slept because he was always hurting and his chair became his bed because he couldn’t lay down anymore. After years of being misdiagnosed, suffering and his spine completely fusing my Dad was diagnosed with something called Ankylosing Spondylitis. I remember being glad he finally had an answer to all of his pain and his spine frozen in a bent over position. I also remember being heartbroken for him knowing it would never get better and that he could never stand straight again. One thing that stands out most in my memory though is my Dad telling us he was thankful that the doctor told him that only males could carry this disease and how he was so relieved to know that none of his three daughters would suffer like he had…..So as you can see I never related his pain to my pain and how I was headed down the very same painful path. After going to my family doctor and getting no answers from xrays I decided to try a chiropractor. I went to the chiropractor for a week, told him how I couldn’t sleep anymore, how walking was a struggle…how depressed I was. He tried to adjust my back and I screamed at the top of my lungs in pain and cried… chiropractor knew something wasn’t right. I remember him handing me tissues to wipe the tears from my cheeks and looking at me so concerned and then even though I still had not put two and two together told him about my Dad. I only knew the first part of the name “anky……” is all I could tell him, he filled in the rest. He then told me how females could get that disease too and I remember it felt like my heart fell into my stomach. …at that moment I had my answer, I knew I also had Ankylosing Spondylitis. I remember going home crying and my husband David hugging me, we were all too familiar with this disease and were both scared. I was sent first for the HLA_B27 gene test, which of course came back positive. My chiropractor called me and told me the news and told me he was sorry and that I shouldn’t come back because he couldn’t treat this disease, that I needed a rheumatologist.  After being sent to the rheumatologist and having the MRI which confirmed the inflammation in my spine and around my tailbone I began treatments and the rest is history. I’m 36 now and I was diagnosed at age 32. Even being on biologic medication I still struggle everyday. I’ve learned it doesn’t matter how long ago you were diagnosed, this disease consumes your life. I am not angry or bitter about having it but I do get depressed. I have days where I feel like I don’t know how I’m going to live with this the rest of my life without going crazy. I have days I feel sorry for myself and I have days thinking “why me?” Most days are focusing on doing my best to live the most normal happy life I can. I’m thankful to God for a loving and very supportive husband and three beautiful daughters. I want to show my girls that this life is not perfect and we all have struggles and it’s up to us how we react to it. I also know that it’s ok to cry, to be sad and know that this disease is so overwhelming alot of days. I have fears about my future, will my spine curve over and freeze, will I ever have go without medication and how could I bear it…..though I have so many fears and struggles with AS I see the big picture of life and know I have a God who loves me and will carry me through…

Middletown Ohio United States of America

2 Responses to “Mandy”

  1. Dear Mandy,
    Thank you for sharing your story with us. I hope more than anything what comes out of the “Faces” project is that the misconception about it being a mans disease is put to rest. I hope one day we find a cure. I hope one day you will share your father’s story. Thank you so much.
    Sincerely Cookie

  2. My husband has had AS for a number of years so I know what you are going through as I watch him suffering so. He cries with the pain in spite of the narcotics he’s taking. The depression has gotten much worse too. I am wondering if you mind sharing with me what kind of biologic you are currently taking and was it prescribed by the rheumatologist? We know that God IS in control, but I keep searching for answers. Thanks for sharing your story.

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