Symptoms of Negativity

I titled this article “Symptoms of Negativity” but please do not think that this is going to be one of those, outward in, all you need is a smile on your face and you can cure your chronic pain!

I’ve been dealing with AS/AxSpA and chronic pain since 1994, I know very well that a smile won’t cure you. I smile a lot! Way more than a normal person should. And I still hurt so much, some days I can't imagine life is going to keep going like this.

So, smile if you want to make everyone around you feel better, and, heck, if it helps you, go for it! Show those pearly whites!

I’ll be over here keeping things real.

Still, there are some things you can do to keep that positive growth mindset when you feel like you are crumbling.

The symptoms of negativity

I just want to start off by saying that we know you hurt, and we are there with you. You are never alone in the AS/AxSpA community.

When you start to hurt, the shadows come out to get you.

(I am stealing a concept from an iPhone game I like to play, “Shadow’s Edge”. It is designed for teens to help them through negative thoughts and feelings through art and journaling, but the concepts work for me as well.)

When the shadows of pain come out, you begin to feel alone, that nobody understands you, and these feelings are totally normal. Truthfully, nobody understands how you are feeling other than you. Even I can't even imagine what other people feel like. I don’t know if your pain is worse, I don’t know if I manage my pain better, or if a treatment is working at its best. Living with AS is full of unknowns. The biggest unknown is: what will you feel like tomorrow?

And that is where the shadows of negativity find their way into your head. “I can’t believe this is my life!” “I wish I could still do xyz!” “What if a jet engine just fell on my head Donnie Darko style?”

All these thoughts and more have crossed my mind multiple times this week, and countless other times throughout the past 20 years. Living with AS is not living.

So, this concludes the part where I keep it real.

Positive growth mindset

I wanna give a shout out to all the teachers in the room whose eyes either perked up or mumbled “Not more of this." Sorry, I have to dip from the world where I live.

“People who have a growth mindset believe that even if they struggle with certain skills, their abilities aren't set in stone.” (Morin, 2022)¹

I will point out that, for some of us, our abilities are rather “set in stone” or more accurately the quick drying cement coating our spines as Mick Mars refers to it. We can only do what our bodies allow us to.

However, sometimes we need to carpe phialas, seize the spoons!

When you are struggling, and the negative thoughts of “I can’t do this” come trolling through your mind, ask yourself “What can I do?”

If washing one dish is all you have the energy for, then wash that one dish and be happy.

Read your story

Think about all the good you have done in the past.

I often think about the first house we owned and how much work we were able to do back then. We would stay up till 3 AM tearing up carpet, removing wallpaper, and painting every surface. Get some sleep, wake up and do it again! I am always asking my wife “How were we able to do that?!” It is never a negative thought that I can not dedicate myself to that level of productivity anymore, it is amazement that we could do that, and we laugh.

I used to love playing golf. During the summer I would sometimes play 36 holes a day. Now, I take one swing during a quick lesson with my nephew, my hands and arms hurt for a day. I can not safely play golf anymore, but I can still remember the day my dad and I won the Father/Son Championship after playing the best rounds we have ever played. My dad looked at the leaderboard with us safely on the top and said “We will never play that well again” and he was right! Last place the following year. But, I can laugh, and that’s what matters.

When the shadows loom

Spondylitis superstar Charis Hill once said “It’s hard to feel good on the good days because the black cloud of AS is always on the horizon.”

They very accurately sum up what we are all feeling. We never forget about our Spondylitis, it is always there like the meme of Kim Kardashian peeking from behind a bush, “Don’t forget about me."

When those black clouds are over you and don’t seem like they will ever leave, here are some thoughts that you can hopefully use to fill your head with a positive mindset.

Yes, today has been painful, but tomorrow is a new day. Okay, eating ice cream might not have been the best idea, but it was exactly what I needed at the time. My family does not understand how I’m feeling, but there are millions of other people who do. I was only able to sweep one room, but at least I now have a clean room.

These are just examples from my own life. But, feel free to modify them for your own experience.

The moral of the story is, life will go on. You are currently living a chapter out of the book that is your life. There will be rising actions and conflicts, but your book is always being written.

Be the hero

Are you the hero of your story? And if your answer is no, why not?

I heard this on TikTok last night. We were given this disability because without it, we would be too strong. We are strong, so strong, amazingly strong.

Yes, we hurt. Yes, we can’t do everything. Yes, we might need a nap.

But...you are still here, and your story is not over.

When you are experiencing the symptoms of negativity, try to think about the positive side of things.

No, it won’t cure you.

But, sometimes it’s the best thing you can do.