When it comes to Ankylosing Spondylitis, and we hear the word “broken”, we usually assume it must mean a bone of some sort. But, in the case of this post, I’m focusing on emotions. This isn’t a disease we volunteered for and the challenges test our limits daily. I’m honorably a mother, wife, sister, aunt, and friend and to constantly battle to pretend is exhausting. I find myself wrestling with my words as they want to leave my lips as to catch them so my loved ones won’t continue to hear my broken record or complaining. Sadly, I’ve realized this has become their mindset or even worse that I’m exaggerating, but as you know there is no way to exaggerate this pain. It is real, if anything we underplay the pain for their sake. Although, I try to limit my health hurdles talk, I find myself venting to my loved ones. When something, unfortunately, consumes so many of your days between doctors, flares, insomnia, infusions, medicines, and so on, you pretty much live a life that makes this become one of your unintentional topics. So I continue on my path of pretending to be well.

A few weeks ago, I got to that point. The point so many of us hit many times in our journey. I broke. I shattered really. I was going about my normal routine of playing pretend and something triggered me to break. It was something that an onlooker would think was so silly, but for me it was that last and final thing that I just couldn’t pretend to smile through for one more second. I’m embarrassed to share it with you, but at the same time I know as fellow AS’ers it is vital that you know you’re not alone and hopefully you can empathize with me so I must tell you the simple silly final straw that sent my week into a tailspin. Ready?

A cup was left on our kitchen counter.

Can you believe it!? I mean how dare the culprit in my family drink something and not clean it straight away! Normally, I would’ve just put it in the dishwasher. This time, I broke into a million pieces. I went from there and just shut down to everything around me. I know it had nothing really to do with the cup, but I needed something to focus on, and I found it in the cup.

When I wear down like that I go through an array of emotions of what I like to compare to a visit to the zoo. I start at the lions. I roar in nice and loud, make my presence known. Really what that is in our AS world is I can’t pretend I’m not hurting for one more minute. I need to release all my hurt somehow. Next, onto the bears. I say this because they hibernate. My bed becomes my friend. I don’t want to be unkind with any frustrating words or be bothersome to my family since I’m not feeling well. Next, onto the aquarium. Here you can choose whichever aquatic animal your imagination desires. I relax in the bath to get the warmth on my hips and back for a bit. I have music on that relaxes me. Finally, as I begin to feel stronger I’ll move to the giraffes and go for a walk or to my Pure Barre class to start stretching out again. Trying to stay long and flexible is so important to our fusing bodies. It works for me, not sure why or how, but it does. If you haven’t found anything yet, feel free to try my zoo. If anything, it’s entertaining and keeps your mind busy.

I think as AS Warriors we can control so little of what is happening in our own bodies and it becomes extremely overwhelming. We look for any possible control we can have in our life. For me it was a cup, for you it may be grocery shopping or mowing the lawn, but we all have something that will make us break. Mine are different each time. I always think I’ll accept that I will not be able to control what is happening to my body, but to be honest I’m just too stubborn and hopeful. On one hand, I have never been good at taking “NO” for an answer, so the fight remains in me. The other end of this is my enormous feeling of hope. I truly believe if we continue to spread awareness, we will find a cure.

8 Comments

  • Lizzie says:

    I can relate to this so much. Thank for you for sharing this and making me feel less alone in my struggles

  • Gloria says:

    Great article! I could so relate to it. I am very frustrated and tired of trying to keep everything together as I feel my life slowly slipping away. I have been on wait list for hip replacement surgery for a year and a half. I have Ankylosing Spondylitis pain in addition to this. Last night I thought I would do the simple chore of walking around the block with my dog as it was a nice sunny day. I got a pain in my hip which threw me off balance and fell to the sidewalk. I am now sporting road rash. My mood is not the best today and I do not have the energy to pretend I am okay to my family and colleagues.

    • Amanda says:

      Thank you. I’m so sorry to hear you fell yesterday. I have 2 dogs of my own so I understand how getting them a little exercise (and us) is helpful. Of course, not sporting your new road rash accessory isn’t the best way to end it, but hey, throw on some lipstick and grab a heating pad, throw it on your lap at your desk (I’m boldly assuming you have a sit down job) and call it a day. Wishing you a speedy recovery! I know how rough this must be, our patience are no good when we are unwell, you are in my thoughts!

  • Sheila says:

    I too can relate to this. I’ve gotten very good at pretending everything is well to my family and friends. I do have those days though where even one little thing can alter this pretense and I give in. I find it a relief though to have those days because it’s a release and with self-care I always feel a little better afterwards. Thank you for sharing. <3

    • Amanda says:

      I’m comforted in knowing I’m not the only one. When I chose to write this, I was a little hesitant, but the response has reminded me that we, our AS family, are all in this together. I hope you feel the same.

  • Laquayle Bent says:

    This made my day. I understand completely. Sometimes I will seensomething on tv, like an animal commercial and I break down in tears. My boyfriend is there for me and he is starting to understand just how much pain I am in. He now comes to all of my appointments with me to have a better understanding. I was diagnosed when i was 14. I just turned 25 a few weeks ago and the pain has undoubtedly gotten worse over the years. I have had many days like the one you described, but it helps knowing I am not the only one. I recently got a tattoo as a conversation piece to inform more people of this life consuming illness. I would love to chat more with people who truly understand what daily life is like with ankylosing spondylitis.

    • Amanda says:

      I’m so happy to hear you can relate. It sounds weirds to say it’s comforting, but it really is, and I am sure you understand where I’m coming from with that comment:). Wishing you a great day. I love that your boyfriend is trying to understand your illness. That is a great step!! So proud!

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