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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • NewMan! author
    4 weeks ago

    Last night I had a Terrible flair and wake up at 3 O’clock in the morning. The pain was excruciating and was from the neck till the middle back. I felt like my spine is bulging out of my skin. The pain lasted for an hour and gradually stopped. I called up my Rheumatologist in the afternoon and he asked me to take some pain killers, I am also still on the medication he prescribed me.

    I booked an appointment with my Rheumatologist next Saturday and I am going to ask him if I could start on TNFs. I hope I don’t get that flair again tonight. I am starting to feel really depressed.

  • JWBuck
    1 month ago

    seems I had the same going on as a kid. Managed to play football tried to wrestle did not work so well..not limber enough…AS as a kid teenager then adult with out knowing or havind any idea of what is wrong.. then I joined the Army, talk about being ignored. try going on sick call for pain for no absolutley no reason..atleast known by me.. sick call turns into embarassment to me.. my ankle hurts cant jump rope or run.. doctor dont skip rope or run x2 days..no PT goto motor pool.. i managed an honorable discharge and I am a Decorated soldier.. I am 55 now diagnosed this past January after a life time still plugging away…its a fight..it has made me mean when idont want to be… irratated constantly does that…on humira sunce diagnosed…damage is done…so yeah its tough as hail..

  • Lawrence "Rick" Phillips moderator
    2 months ago

    I had much the same experience. when the doctor said AS, I was shocked. What is that? Well then I looked it up, wow no kidding. Why didn’t doctors and others see it for all those years? I was amazed.

    Thank you for your story, keep connecting with us.

  • Jed Finley moderator
    2 months ago

    Wow, what a powerful and heartbreaking story. Thank you so much for sharing this with the community. The social aspect, especially when you are young, is one of the hardest symptoms of AS. But, youre right, you are not the only one!

    How did it feel when he asked you if you had AS?

  • NewMan! author
    1 month ago

    Hello All,

    The rheumatologist appointment went well and I was put on a medication plan. It has been a couple weeks now and there has been significant improvement in terms of the pain. I am not sure if I could mention the name of the drug that I am on but it has been very effective.

    The good thing now is that I have gained more self confidence ever since I got the diagnosis. Now I can tell anybody who asks me what is wrong with me that I am suffering from AS and I can explain it to them. I don’t have to lie or make up stories as in the past.

  • NewMan! author
    2 months ago

    Thanks Jed for taking the time to read my story and your support. I am so glad that finally there are people who who could understand my pain and relate to it.

    To answer your question, I never knew (Until recently) that I am suffering from AS. I always thought that what I have is a birth defect. So my first reaction to anybody who used to ask me about my condition was always defensive and deceptive. I also used to come up with stories (Like accidents or Injuries) thinking that this would make me look like a normal person who had a misfortune that ended him up this way. I was about to use that technique with that guy as usual but when he asked me if I had AS I had a gut feeling that finally there is a clue. What was even more relieving to me was that face that he has it as well!! I felt connected, accepted & understood. I also felt that this was the best moment of life as I got to finally know that I am not the only one.

    I would like also to tell you that I had an appointment yesterday with a Rheumatologist who diagnosed me with AS ( at a late stage). He took X-Rays of my body and blood sample and I am waiting for the results. The next appointment is is next Saturday.

    Thanks Buddy 🙂

  • Lawrence "Rick" Phillips moderator
    1 month ago

    I am glad you are doing well. Congratulations on finding both a good doctor and medication.

  • Jed Finley moderator
    1 month ago

    So much truth in all you said. While I don’t get defensive (at least not yet) the stories about accidents and injuries just to sound “Normal” is so relatable. I wear knee braces and especially when kids at my school ask (if I dont think they could handle an AS story or just wouldn’t care that much) I just tell them, my knees hurt.
    Its just a lot more easy.

    Glad you got an official diagnosis! 🍾

    Hope that appointment went well and you were put on a solid treatment plan!

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