I Thought I Was the Only One!
I am a 38 years old male, AS sufferer. I have had it all my life.
Being teased as a child
As far back as I can remember, when I was 5 years old, I went to a friend’s house and he had a group of mean friends that I met for the first time. One of the girls ( a very demeaning one) told us to sit around, on the floor, in a circle “folding our legs” to play a very silly game. I was never in my life able to fold my legs so I sat down on my knees. The girl stared at me with her infamous cold eyes and said: “Fold your legs dumb ass”!!
“But, I can’t”, I said
“Why? Are you a cripple?" She said, “There is no room for cripples here. Leave us we don’t want to play with you.”
I went back home and cried the whole night. The next morning, I told my mom about it and she told me not to be upset, she was just a mean bully who thinks being mean to people makes her better than them.
From that moment onwards, I started realizing that I am different.
Suffering without knowing the cause
Days passed and people around me started noticing something wrong with my posture and movement. The first time I actually went to a doctor about it, I must have been about 8 or 9.
I went to see a general practitioner about hip pain and I got referred to a "specialist”. No tests were done and I just got told it was growing pains and to be honest I think they thought I was putting it on.
10 years later the pain got worse so I went to see a GP, again, sent to a specialist who did an x-ray that revealed enlarged hip and shoulder joints. He couldn’t properly diagnose my condition and told me that the back pain that I have is due to my stiff hips that carry the entire weight of my upper body. He suggested that I should do a hip replacement surgery.
I didn’t really like the idea so I decided to carry on with my miserable life and live with the excruciating pain.
You can't imaging the pain
You cannot imagine how difficult it is to live with this agony. Standing up with a hunched back in front of people after sitting for a long time was very embarrassing. Stepping into a car is very difficult. The worst part of my day-to-day life are the questions that I get asked from people:
"What is wrong with you?"
"Have you had an accident?"
"Do you have a limp?"
And of course, I have to come up with stories like “ I fell down the stairs when I was a child” or I had a car accident that left me with a spinal cord injury”
Finally, someone who gets it
A month ago, I was sitting in a cafe reading a book. I stood up to get more coffee and as usual, I was hunched like a 60 years old man. While I was walking to the counter a young man stopped me and told me. “Are you suffering from AS?”
“AS”, I replied back, “What is that?”
“Ankylosing Spondylitis” He said.
“I don’t know what that is!!” I said
Then he told me that he has the same illness and went on to explain to me the symptoms.
I was pleasantly surprised. “I am not the only one”, I thought.
Finally, I know the name of my curse.
From that moment on, I started researching AS. I googled rheumatologists and AS communities and found out about this site.
Looking for support
I managed to book an appointment tomorrow with rheumatologists and I am looking forward to that.
I need the support of every one of you and I really want to vent about it.
Thank you all.
Do you use the word disability to describe your AS?