Spondylitis is more than a backache and no pill can fix it all. The emotional disconnect from chronic pain weigh heavier on the mind than one may think. We as humans have certain needs that if not met can lead to depression and other physical and emotional stresses on the body. Stresses that we do not need.
It’s imperative we find those connections with others that actually get it. Those that make us feel a little less crazy amongst the pain and loss. Finding that connection has been crucial for me. Feeling all alone in this was like living in the dark. I felt hopeless. Then when those that were suppose to love me acted as if I was being dramatic or needy instead of frustrated from having a chronic debilitating illness just crushed me. I couldn’t get myself out of the funk but I couldn’t get any help either. I searched for others that may be in my position and that is when I came across support groups. Those groups gave me that connection I so desperately needed and soon I realized I was not crazy and I needed to stand up for myself.
Without the support from those we love our battle so much harder than it needs to be. This is why I want to work to raise awareness beyond the medical field. The more I know about A.S. the easier it is to explain it so that they’ll understand. I try to talk about my pain and struggles in a way that doesn’t come across as just complaining. It’s imperative they try but it’s also our job to not give up and let them think they are correct. If we never speak up no one will ever know.
How many of us never heard about Ankylosing Spondylitis till diagnosis? I had no clue. We have to creep out of those comfort zones and spread the word. We can do this simply by sharing one little tidbit when the subject comes up. I realize no one wants to sit and listen to someone complain about their chronic illness and that is not what I’m suggesting. When someone asks I give them a serious yet brief explanation of whatever body part may be failing me at that moment and move on. So many end up coming back to me later and want to know more. That is how I share my battle with others. It’s been proven time and time again word of mouth is the best way to spread the message. We are the only ones who know the real impact of this disease and I don’t know about you but I’d much rather them know the real struggles over what some study may be able to prove at the moment.
Awareness is important. It shows others care and we need and deserve to know others care.