I was a bit wary to share my story and put my face to this frustrating disease, but after another night of awakening in pain and thinking about how much support I’ve found in reading others AS stories, I felt as if I should.
For starters, I’m 28 years old and a very busy hairstylist in Los Angeles. I absolutely love what I do and hope my disease will allow me to work hard in my profession until I choose not to any longer.
For as long as I can remember I’ve lived with a lot of back pain. I have scoliosis, so I always assumed my pain was from that. At around age 15 the pain started becoming so severe my parents took me to the doctor to see if my scoliosis had gotten worse. The doctor checked me out, said my scoliosis was so slight it shouldn’t be causing me pain, and then proceeded to tell my mother that my pain was probably due to the fact that I was petite and had a “large chest”. Yup my doctor went there. My mom thought it was hilarious, and I at 15 was mortified, but I remember the frustration I felt, because my pain hurt more than they all seemed to realize.
A day never goes by without pain, but at times it gets so severe it puts me out for weeks. The first time this happened was when I was 17. I was laying down, and my back was very tender and sore, and out of no where I felt the most excruciating pain throughout my entire body. I couldn’t move or breathe without making it worse and literally fell out of bed to the floor screaming for help. My dad carried me to the car and brought me to the hospital. I had no clue what was going on, but when they even tried to inject me with pain medication it hurt when they touched my skin. The nurse told me I must have pinched a nerve and to relax because other people are suffering way more around me, and I shouldn’t be so worked up. At the time, I felt really bad, because I knew I was in more pain than I have ever felt, but if I had only “pinched a nerve” how could I be in tears and flinching when she touched my skin. I felt ashamed and guilty because I knew people were fighting greater battles around me, and I did everything I could to keep quiet until we left the hospital. Looking back this saddens me, because I was shluffed off for what I now know to be my painful disease, and I hate that the nurse made me feel that way. How could she know though? To her I probably seemed like some dramatic 17 year old who didn’t want to go to school the next day.
These sort of intense flare ups happened time and time again, and I could never figure out what was wrong. Doctors couldn’t help me and just wanted to give me pain killers, which didn’t help me at all. I tried acupuncture, chiropractors, psychical therapy, to no avail. At around age 24 my knees started to go. I used to run a 3 miles a few days a week, and literally one day it was if my knees broke. I’m super stubborn and will push myself until I literally can’t do something, and I did that with the running. I’d still try hoping for a different outcome, but after about 5 minutes on the run I could barely even walk. Within the past few years my hips and hands have also become affected. My hips have been one of my biggest struggles, because it hurts to sit too long, and it hurts even worse getting up from sitting. I’ve been able to push myself at times on the treadmill when I wasn’t so flared up, but when my knees and hips are hurting, it’s near impossible to exercise, which is extremely frustrating! My hands make it hard to work sometimes, but so far I can push through it. I love what I do so much that my passion will take over my pain. My hands do show my disease though. They are so arthritic and ugly, and I’m really self conscious about them.
So how I got my diagnosis was a bit interesting. About 3 years ago I started having issues with my eyes, mainly my right eye. I’d wake up in the morning in the dark, grab my cellphone to check emails and be blinded by the light of my phone. The pain was gnarly, my eye would get swollen and so red, and I couldn’t really keep it open in the light. Each time this happened I went to eye doctors to figure out what was wrong. They would prescribe me a steroid eye drop which would make it go away, but a few months later it would always come back. Then out of no where my retna tore. I got a laser procedure to seal the tear, but how the hell did that happen?! I was so frustrated and confused. After all this my eye doctor recommended I get blood work done to check for any auto immune diseases. He said nothing seemed to be wrong with my eye, and it was if my body was attacking itself. And sure enough, drum roll please, he was right! Not only did I turn out to have Ankylosing Spondylitis, but I had Uveitis. Finally an answer to all my suffering for so long.
Currently I’m hopeful. I hate medicine, but if something can help me live pain free then I’m open minded to taking it. Besides the body pain, the chronic fatigue associated with the disease is what gets me. I naturally have tons of energy, and out of no where it’s as if someone turns off my light switch on a daily basis. It’s been hard for me to explain my disease to people, mainly because most people around me would never guess I’m suffering. I’m not a complainer, and it doesn’t do anyone any good to talk about the negative in your life, so I just never have. After getting diagnosed, my fear was that people would think I’m bluffing, and I’d have to carry around stuff from my rheumatologist to prove my case. My loved ones tell me I’m crazy for feeling that way, but I still do at times. I’ve found so much support on different blogs and websites, and I feel as if it’s my duty to share my story in case it helps another fellow AS sufferer. It’s the hardest thing ever to be 28 years old and look healthy, but feel 80 years old on the inside. How can someone without AS even grasp that? I believe the mind is a powerful thing though, so on the days where I can mentally push beyond the pain, I choose to have awesome days.
For my AS peeps, don’t let this disease ruin your life. We can’t let this disease fully control us. Just as everyone else has a choice when they get out of bed in the morning if they are going to have a good day or not, people with AS have the same choice. Sure it takes us longer to get out of bed, and we have to oil out our creaks and joints and walk through the pain, but we can still choose to mentally feel good that day.
Los Angeles, California United States of America