When you are left hurting for so long without answers it can impact every part of your life. You know there is something wrong with you but no one can figure it out. They all begin to think it’s “all in your head” and sadly you do to. You accept whatever treatment they want to give you and even though it does no good you do your best to pretend it does.
The average delay in diagnosis from onset of symptoms is 10 years.
I hurt for 20 years but I thought that was normal. My school teachers started noticing things weren’t right with my mobility in Kindergarten. They marked it on my progress report that I had limited mobility in my spine. Those exact words! Nothing happened nor was it noticed till I was in my twenties. I assumed everyone hurt all day and that grunting while moving around was just part of it. After all everyone is constantly complaining of “being old” so I figured that was it. It wasn’t until my twenties when I flared to point I couldn’t walk…that’s when I went back into the doc for answers. I found the doc that told me it was all in my head and I needed to get over my childhood or I would kill myself. I accepted that answer for about a second! I cried and didn’t want to go back to another doctor. I eventually did though and I found one who understood. They are out there!
So just in case you aren’t sure the pain you are feeling is real! People complaining about being old are not feeling what you are feeling! It is not normal to be so stiff and in so much pain everyday. There are doctors out there who will listen! Do not give up on yourself! You know what you feel and you need to make them understand and if they refuse, find someone else!
The worst damage done by Ankylosing Spondylitis happens in the first ten years of the disease.
Scientists have come to the conclusion that the disease is most active in the first ten years. So the years that it’s so vital to treat you are the years you must spend fighting for answers. Meanwhile the damage is happening with nothing to slow it done. This is permanent damage being done to the body while physicians are accusing you of being a junky looking for pain meds or someone with mental disorders that needs psychiatric help because they say there is nothing wrong with you physically. Time will show the error of their ways but it’s you that’s left with the damage physically and emotionally. This is unacceptable to me!
Ten years or even one year is too long to wait for an answer! We can decrease this time by standing tall together and forcing the medical field listen to us!