I have been told for as long as I can remember that I give my thoughts and feelings away with the expressions on my face. I think I’m fooling someone with a forced smile, giggle or silence portrayed. After meeting many others with Ankylosing Spondylitis I have learned I am not alone in my “smiles”. We often hope that if we put on a front of sorts, people will treat us normal or judge us less. I’m here to say this is so untrue. I recently was at the store and was having hip and neck trouble that day. I was moving a little slower than normal. I was hearing the “hurry up” comments and sighs but even with my never ending strength I just had to accept faster movements were not in the plans that day.

AS’ers, I question if our smiles of strength are the right thing to do? An emotional breakdown can happen for me once in a while. I try to wait until I’m alone, without family or friends around so they will not see the extreme pain I have inside and out. I’m worried enough, so why put the extra pressure on them. I know how wonderful it is to have other AS’ers to talk to, but sometimes I just wish the rest of the world understood how real our pain can be some days.

You and I both know our pain is real, but if the average person looks at me I look “normal”. I’m young, still mobile and living your average suburban lifestyle. I go shopping, care for my house, carpool and give the love needed for my children no matter how much I may pay for it later. You would never know that I have something that constantly stops me in my tracks. The extra fog and nausea of pain medicine, muscle relaxers and the fun injection days that really can knock us down just add to the point of having no other choice but to never give up hope. We also have the scary list of side-effects and possible future additional health issues that come up throughout our AS adventure such as, kidney, heart, lung, fusion and cancer issues. You want to scream out as to how much more we can be tested with our strength, optimism and faith.

So what are my expressions really saying? To me, they express a hope for a better tomorrow. Not only for me, but for all that suffer, whether it be from Ankylosing Spondylitis or another disease that can control or “hide” our real pain. Below is my list of what I feel is the “mastered” expressions I use on the bad days. Don’t get me wrong I do have genuine smiles, but I can use the same ones just to shield, not only loved ones, but myself from the pain I cannot control.

  1. A Smile – If you can’t see me cringing in pain, you won’t know the pain is there
  2. Biting the inside of my cheek – I do this instead of yelling out the frustrations
  3. Pressing my bottom lip – If my mouth is forced shut no sounds of desperation are heard
  4. Attempts to sit straight – Hey, I can look like everyone else if I can stand the stabbing pains for a bit
  5. Sarcasm – It can help hide anything, right?
  6. A look of thought – If you think I am pondering something you won’t think I am really wondering how long this specific flare will last or what I can do to relieve it
  7. Laughs – Shielding pain with laughter is the best medicine
  8. Silence – This says it all

I am lucky to have a strong support system through my husband and some of my friends and family. I know that as long as I continue to “smile” and stay optimistic the future will be bright. I may never find complete relief from pain and may have many more obstacles ahead with Ankylosing Spondylitis, but hope should never be put off until tomorrow. We must keep it alive daily.

6 Comments

  • Jenna says:

    Amanda, This is a wonderful post! The courage to explain what our lives are like with AS is elusive at times. I try most days to reveal what life is like dealing with the chronic pain and symptoms of Ankylosing Spondylitis but it is so difficult to do. I too want to simply smile and say it is all o.k. You inspire me! Jenna

  • Jennifer says:

    “Hope should never be put off until tomorrow.” I love that.

  • Vic says:

    I to, have met some very rude people who see the normal looking person on the outside, and think that there must be something mentally wrong with this guy. I tend to lash out at these people like I’m a big strong guy, which only seems to confirm to them their initial thoughts about me. If they only knew what it is like to live in our shoes for a week or so.

  • Jenni says:

    Thank you so much for this. As I write this I have tears running down my face. It is so true and most of the time I hold it together, but at this moment, I want to scream at the top of my lungs because I am so sick of feeling like this! Thank you from the bottom of my heart for sharing!

  • Marilyn Kamna says:

    Amanda,

    My new found friend, we are ‘Kindred Spirits’!

    😉

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