Don't Let a Smile Fool You

By Nicky-Flikas-aks

3 min read

Behind that smile of mine hides many things, that I decide who to open up to and tell. Would you be able to tell that I have an invisible illness? Would you be able to tell by looking at me that I am in extreme pain, day and night? Did you know the pain is mostly 24/7, without a break? So before you open your mouth and have a solution for me, on how simple and easy my life is, please think again.

A smile can hide a million things

Did you know I haven't been able to get a good night's sleep for weeks? The pain gets so bad, it torments me. While I try to sleep, I wake up many times in the middle of the night from the horrible pains, all over my body. A lot of the time, I have a hard time picking myself off the bed. I have been afraid to go back to sleep.

The pain carries on with me throughout the day, creating extreme fatigue. From the moment I wake up and open my eyes, this pain stays with me all day. It makes it hard to function. It makes it hard to be productive. Imagine carrying a backpack full of heavy rocks, or better yet weights, all day on your back. This is how it feels to have AS. It affects your whole back, creating weakness to your shoulders. Every bone in your body feels so fragile like they are going to crack or break into pieces.

The daily battle

A smile can look beautiful, but it can fool everyone. Behind the scenes, a woman that struggles every day. This woman is a wife and a mother, that tries her best to give them everything that she is able to do. Even if most of the time, it feels impossible to have this horrible monster around. This horrible monster that makes her be angry, moody, devastated, anxious, and guilty. I mean who wouldn't feel this way? You are fighting a battle every day with no break and not knowing what will come next.

Behind that smile is a painful and weak body. Would you be able to tell how many treatments I have tried and failed? I have been on antidepressants, muscle relaxers, anti-inflammatories, pain medications, anti-rheumatic drugs, medical cannabis. You name it, I have tried it. I am on my 4th biologic right now waiting to see if it will be the one.

Always waiting on another treatment to work

Did you know that every treatment you try, can take up to 3-6 months to see if it will work? Imagine every time, waiting to see if this medication will be the one, and all to hear it has failed on you. All you can do is move on to the next one. Do you ask: why keep trying other medications? Because if you were in pain like this all the time, wouldn't you?

Wouldn't you want some sort of hope that something will help, get you to remission one day? I have tried seeing a physiotherapist, an occupational therapist, and an osteopath. I have incorporated exercise with healthy eating. I have even lost 60 pounds, since my doctors thought that would help out. But I am still in pain daily. There is no cure right now for this disease. It is all about trying to make myself, my body more comfortable.

All I can do right now is continue to take one day at a time. Surround myself by real love and great support around me, that understand. All I can do is have hope and keep that smile on my face, that one day will come and hopefully my journey will become a journey into remission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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MICHAEL 7500 Member
NICKEY SO SORRY TO HEAR YOU HAVING SO MUCH PAIN,HOPEFULLY YOUR DR. CAN TAMP DOEN YOUR INFLAMATION,IE,STEROIDS,BIOLOGICS,NOT SURE WHAT MEDICATION YOUR ON,IF YOU CAN DO SWIMING IT IS A GREAT EXERCISE FOR A.S.I HOPE YOU GET RELIEF SOON KEEP FIGHTING NICKEY BETTER DAYS ARE AHEAD BLESS YOU DEAR.
1. Nicky-Flikas-aks Moderator & Contributor
 <inline-mention username="MICHAEL 7500" user-id="3256264"/> thank you so much for your kind words. I am currently on a biologic and been working with a rheumatologist trying to find the right treatment to help with the pain and how I been feeling. One day at a time I been taking. There has been good days and bad days. But i keep telling myself through the bad days that today is only temporary and I have been through this and tomorrow will be a new and better day. Only thing that keep me going is hope and praying. I love swimming and like you mentioned I find it is great for AS. I wish I had a pool to be doing it more often. I will have to look now that everything has opened up if there is a pool near my area. How are you doing these days and feeling ? Take care, Nicky (Team Member)
Vekav Member
Hi <inline-mention username="Nicky-Flikas" user-id="4559751"/> such a good read and can 100pct relate. I wish I could give more tips than what you already know but make the most of the good days. I hope the latest biologics works for you. Wishing you the best of health
1. Nicky-Flikas-aks Moderator & Contributor
 I am still learning every day ways. Some day I feel like I take some steps back and then I keep reminding myself on how far I have come, no matter how small the steps look like. You got this as you are not alone. Sending you some positive vibes your way, Nicky (Team Member)
Doreen H Community Admin
<inline-mention username="Nicky-Flikas" user-id="4559751"/> Well said Nicky, so many in this community can relate to your description. Be well, Doreen (Team Member)
1. Nicky-Flikas-aks Moderator & Contributor
 Hi <inline-mention username="Doreen" user-id="2383959"/>, Thank you sending you hugs and wishing you well. I am so glad for this community and the support. Nothing better than this. Nicky
Lisa Marie Basile Moderator & Contributor
You write so eloquently and viscerally about the death of this disease. Sometimes when you really look at it, you realize how tough it is. Like you said, the drugs take time to work and sometimes they don’t. And this: “Imagine carrying a backpack full of heavy rocks, or better yet weights, all day on your back. This is how it feels to have AS….” Is so true. A smile certainly can hide an entire world of feelings. I hope that you find some days are easier from others. Sending support! 
1. Nicky-Flikas-aks Moderator & Contributor
 Hi <inline-mention username="Lisa Marie Basile" user-id="2390344"/>, Thank you so much. Trying to take one day at a time and hope for better days. Thank you for the support, Nicky
Lawrence Rick Phillips Moderator & Contributor
 I have had these nasty issues for over 22 years now. What I have learned is that going forward beats stopping. Movement beats sitting and most important finding love is the only real way forward. Keep moving, keep going, after all what choice do we really have? Not much. 
1. Nicky-Flikas-aks Moderator & Contributor
 Hi Rick, You are are so right. I will remember all this next time I am having a hard time. Keep moving is the only chance we have. Only hope into thinking for a better tomorrow. Hope your doing well, Nicky
James Hollens Moderator & Contributor
Hi <inline-mention username="Nicky-Flikas" user-id="4559751"/> , I really felt this one. It can be a really heavy burden how we have to deal with all the challenges of having a chronic illness whilst trying to push on with life all while under pressure to act like we're doing okay. I hope that you are able to have an authentic smile on your face soon without any pressure to put it on! Sending love and positive vibes your way, James (Community Member)
1. Nicky-Flikas-aks Moderator & Contributor
 Hi <inline-mention username="James Hollens" user-id="2386640"/>, Thank you so much for your kind words. Yes it has been very hard again lately. With everything slowly getting back to normal and with many events lately I been a little struggling to keep that smile. I think one thing I missed about the pandemic was not worrying about events and having to cancel or making excuses why you can't go and then others getting upset or not believing you. It is what it is. One day at a time. How have you been feeling? Sending you hugs, Nicky

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