Friday, February 3, 2017

When You "Forget" You Have a Chronic Illness

It sounds crazy, but sometimes I forget.

I forget that I have fibromyalgia and living in pain is not normal.

I forget that I have celiac disease and a single crumb of gluten can make me feel like a zombie for days.

To put it simply, I forget that I have a chronic illness.

casey the college celiac chronic illness

I consider myself lucky that I have the privilege of being able to not "feel" sick 24/7. I do not have a life-threatening illness. I can usually go about my day without having to make any medically-forced changes...as long as I have access to plenty of gluten free food and some extra hours of sleep.

But sometimes, I'm reminded. Brutally.

I'm reminded that gluten really is my kryptonite when I try to use a new shampoo and realize it contained gluten when I feel like an extra from the Walking Dead a few days later. Some believe that gluten free shampoos and beauty supplies aren't 100% necessary for celiacs. After this experience, I'd say I stand pretty strongly in the other camp.

I'm reminded that my body isn't "normal" when I fly to and from San Diego for my college graduation, work for two weeks and, by the time I reach last weekend, want to do nothing more than lie in bed all day.

casey the college celiac chronic illness
The final pictures are in...

I've always known that I'm different - that my body is different. But nothing has shown it more clearly than working my first real job. In college, I always pushed myself. Heck, I probably did more than most students, taking 17 units per semester, working part-time and stubbornly holding onto that 4.0. But I had control over my class schedule. I had homework assignments with a clear start and finish. I had a Disability Resource Center to look to for help when I needed it.

Now, I just have me

I'm so thankful to have understanding bosses, a flexible work schedule and the chance to do what I enjoy - write, raise awareness of important issues and empower women - for a job

But I still sometimes can't stop comparing myself to others. The ones who can work for 40+ hours a week with no problem. The ones who can go on a surprise business trip without having to think about what food they'd need to pack or how many days it would take to recover from the traveling. And I wonder, "Will I be enough?" Not just for this job, but for a career - for making a difference. 

casey the college celiac chronic illness

I know I'm smart. I like to think I'm funny, and I can write (at least somewhat if this blog is any indication). But I'm not normal. I'll never be able to fill the box of a "typical" employee - even if I have periods where I forget just how atypical my body is. 

This last week, accepting that realization has been scary. But the more I thought about it, the more I realized I've been focusing on the wrong part. I shouldn't be focusing on how much it hurts to "remember" my limitations. 

I should be saying, "Thank you" for being able to forget them in the first place. 

Because, when I was diagnosed with celiac disease over three years ago, I couldn't have imagined ever feeling normal again. To be able to eat without asking myself, "Is this gluten free? Is it safe?" To be able to find replacements to my favorite bread products and homemade recipes. To be able to see the positives of celiac disease more often than the struggles. 

And, considering I once compared my average daily fibromyalgia pain to my fractured and dislocated wrist, having a painless day (at least by my standards) should be seen as nothing short of amazing. Sure, the future is uncertain. Sure, my life will definitely be full of (good and bad) surprises. But I know I'll keep making mistakes and learning from them, finding myself and discovering new strengths along the way. 

casey the college celiac chronic illness
From my latest hike...
As crazy as it sounds, you can forget that you have a chronic illness - if even just for a second. And then you discover a new or old restriction and you remember, and it may feel like you're receiving your diagnosis all over again. 

But, I'll tell you a secret. There can be joy in that remembering. You just need to remember how far you've come. 

No questions - just tell me your thoughts!


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