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.
- A Smile – If you can’t see me cringing in pain, you won’t know the pain is there
- Biting the inside of my cheek – I do this instead of yelling out the frustrations
- Pressing my bottom lip – If my mouth is forced shut no sounds of desperation are heard
- Attempts to sit straight – Hey, I can look like everyone else if I can stand the stabbing pains for a bit
- Sarcasm – It can help hide anything, right?
- 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
- Laughs – Shielding pain with laughter is the best medicine
- 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.