It's Okay to Act Like It....

It's been almost 3 months since I was diagnosed with Ankylosing Spondylitis. I have educated myself thoroughly on this intimidating disease, so much so that I'm pretty sure I know a lot more about it than any of the doctors, nurses, or pharmacists I've come in contact with since July (with the exception of the Rheumatologist that diagnosed me.) Seriously, all the medical professionals just look at me and say, "I'm sorry," when they hear that I've been diagnosed with AS.

Even with all my new knowledge, it's hard for me to wrap my around what's truly happening in my body. I've been dealing with this disease for years but the fact that it has a name now is both validating and unnerving. 

For the past 2 Saturdays, I've taken my older boys to sell popcorn with the Cub Scouts at local stores for a few hours. I took a chair to sit in because I can't stand for long periods of time without a lot of pain and fatigue. Each day I got the boys settled at their posts and then I pulled out my pink outdoor folding chair and took a seat. As soon as I did, I felt the guilt settle in. You must know that sitting while everyone else is standing is NOT typical for me. Normally, I would help sell the popcorn, start organizing more boxes, accept and count money, and whatever else I could do to help. It is so hard for me to sit down and sit still. Which is something I have to learn to do.


On the first Saturday, I remember sending Bryan a text message after sitting in my chair for a little while. I was telling him how bad I felt for not helping and for sitting instead of standing with the other moms. He wrote back and simply said, "There is something really wrong with you. It's okay to act like it."

That sentence has stuck with me for almost 2 weeks now. I've been working through that thought over and over again. Ya know, there IS something really wrong with me. It's time for me to be okay with that and to start acting like it.



I didn't need permission from Bryan but I did need permission from myself to accept my diagnosis and start treating myself appropriately, even if that means others don't understand. Although I know the terrible pain I endure on a daily basis, I don't think its possible for others to truly understand what I deal with. Invisible illnesses, like Ankylosing Spondilytis, are not only horrific because of the damage they cause but also because the patients feel like they have to prove the pain they're in since it can't be seen. I noticed that as soon as I pulled out my pink chair each week, I started explaining to the other moms why I had it and that I felt so terrible for sitting out. I was trying to prove to them that I needed the chair even though not one of them minded that I was sitting down. After years of trying to get my doctors to believe me and trying to prove that something was really wrong with me, it feels so good to have freedom from trying to prove it. Bryan's comment spurred this realization on for me! 
(You never know what your encouragement might do for someone else!)





 Today I am grateful for all that God is teaching me through my diagnosis. On the surface, it seems like getting diagnosed with a degenerative, chronic illness would be terrible but, I've learned so much already and I've been given a lot of freedom too.  Accepting the illness and the issues that come along with it and being ok with acting like it, is a pretty big breakthrough for me!  I am also thankful for what is yet to come. I know God has good things in store for me and my family. He may not miraculously heal me tomorrow (or He may) but He is at work and using this entire situation to spur on growth and maturity for me and my family. To see the faith and trust blossom in my children makes every ache and pain worth it!

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