Yes, I'm Always in Pain
Hi, my name is Steff Di Pardo and I suffer from ankylosing spondylitis. AS is a chronic pain condition, which means I’m always in pain. Yes, always!
I often find myself very frustrated having to explain my pain over and over again. I’ve found a lot of the able-bodied community doesn’t seem to grasp the concept of chronic pain. I’m not saying that’s all able-bodied people, just most of the people I have encountered.
In all honesty, it can get really tiring explaining myself and my disease over and over again. It’s one thing to explain my disease to the new people I meet, but another thing entirely to re-explain over and over again to the people that I know.
The key thing to know about chronic pain
The definition of the word “chronic” is: persisting for a long time or constantly recurring. My pain is both constantly recurring AND persisting for a long time.
That’s exactly what the word means. It means I’m always in pain. It’s unfortunate, and trust me, I hate it more than you do, but it’s just a part of my life now.
What I’ve found
I’ve found that a lot of people can’t or don’t want to accept the fact that someone could be in pain forever. To be honest, it’s a hard concept to grasp.
When I was first diagnosed at the age of 22, the idea of being in pain for the rest of my life didn’t exactly sit well with me. For good reason, I became depressed and was pretty angry at life for a while.
The idea of chronic pain is something I had to get used to quickly because it’s my life now. I can’t really do anything to change it, so I’ve accepted it for the most part. I still have my days, but I know this pain isn’t going anywhere.
It’s a scary reality
For people that don’t suffer from chronic illness or chronic pain, being sick or in pain forever is a scary idea. The fact that you could get sick at any moment and it will never go away isn’t “normal” in society. It’s not mainstream.
In reality, over 50 million adults in the United States alone suffer from chronic pain. That’s a huge number of people, we just don’t talk about it enough.
What I’m doing
So what am I doing to help change this? I’m talking about it. I’m writing about it. I’m raising awareness about it.
The best thing to do to raise awareness for something is to TALK about it. I don’t try and hide my pain from anyone. I don’t have the energy to do so anyway.
If I’m in pain, you’ll know. Whether I talk about it or not, I’ll probably look uncomfortable. But if I’m flaring, you bet you’ll hear about it. By doing this, I’m hoping more and more people will start to grasp the concept of chronic pain, and I’ll never have to explain that “yes, as I’m sitting here talking to you, my hips and knees are on fire” again.
Do you use the word disability to describe your AS?