For most people, the phrase “your labs look normal” is followed by a sigh of relief- a weight lifted from your shoulders, a cause for celebration. But for people living with a chronic illness- the same phrase is often followed by immense frustration, soul-crushing anxiety, and endless nights lying awake wondering if you’ll ever feel as normal as your lab results indicate you are.
If I had a dime for every time I walked away from a doctor’s office feeling more discouraged than when I went in, I’d be one rich woman. Years of searching for answers to what is happening with my body has led me to not only dread the all-too familiar phrase “your labs look normal”, but also to realize the hard truth: the medical field has a long way to go to adequately recognize and treat disorders that cannot be seen with the naked eye.
When you break a bone, it’s easily confirmed by imaging. The imaging identifies exactly what the problem is and the medical team finds a quick solution to get you on the mend. But what happens when your illness doesn’t show up on a simple x-ray, scan, or lab test? What happens when the doctors can’t agree on what’s wrong with you?
I can tell you from experience: You wait. And wait. And wait for someone to make a referral to the right specialist; for someone to care enough to order the right tests; for someone not to write you off as hysterical, anxious, depressed, or dramatic. You sit in the bathroom for hours, praying for an end to the gastrointestinal hell. You live with an endless cycle of constipation and diarrhea. You drive with a collection of plastic bags in the door because you never know when the waves of nausea will wash over you again. You miss family functions, holidays, and events. You have others question the validity of actions. You analyze your every move throughout your day in an attempt to identify your triggers. You chug electrolytes to keep you hydrated. You ice your ankles and knees, wondering how your body could be breaking down so quickly. You wonder if this is the last time you’ll be invited to a social affair because you’ve become “the flaky friend”. You sleep but you never feel rested. You worry about the financial toll your illness takes on your family. You wonder if loving you is a bummer. You question if you can live the rest of your life without answers. You wonder whether crawling under a rock and staying there forever is an option.
I received my diagnosis of Ehlers-Danlos Syndrome (hypermobile type) and Eosinophilic Esophagitis when I was 29 years old. The feeling was equal parts relief of finally knowing what was causing my issues and learning what I could do to help, and grief for how my life would need to change to support my body to get healthier.
Living with such an unpredictable and difficult-to-see diagnose disorder is hard. I’ve learned to take life as it comes. I cannot predict which days I will wake up in a flare-up, feeling as though I have 100lb sandbags strapped to every extremity. I can’t predict that I’ll feel well enough to attend an event that I RSVP’d to 3 months ago. I can’t predict which days my body will cooperate and when it will not. My trips to the grocery and restaurants require lots of planning to ensure I am able to avoid my allergens. My medications cost tens of thousands of dollars per month (seriously… how is this legal?!) and while I’m thankful to have insurance and other supports that help me to remain on my medications- I realize that others are not as lucky. My ability to cope with my illness is a learned skill, and one that is still developing. I still struggle to recognize when a symptom is “normal” or concerning - as “concerning” has been my normal for a very long time. I’d be lying if I said there weren’t days that I didn’t slip back into the “what did I do to deserve this” internal dialogue. Of course I still get discouraged after waiting months to see a doctor who has never heard of my condition and tells me to just lose weight, drink more water, and pray about it. But I do what I can to keep a positive attitude and outlook, to wake up grateful for another day regardless of how my body responds, and honor whichever stage it is in. My experience living with an invisible illness fuels my desire to educate and advocate for both medical professionals and patients in the hope that no man, woman, or child has to wait decades before finding a diagnosis and treatment like I did. My favorite medical providers are the ones who view being on my medical team as an opportunity to learn something new that will help other patients vs. ones who see me as a nuisance.
To those still looking for answers-
I know that my diagnosis may not be familiar to you, but I know that my experience may be. I hope you find some comfort in knowing that you are not alone. Don’t stop living your life and don’t take those good days for granted. Rest when you need to, then go back to kicking ass when you can! Knowledge is power- so learn all you can, ask questions, and spread awareness.
And to those who love someone with a chronic illness- give grace where it’s needed. Empathize- pain and anguish are shared human experiences that we will all feel for different reasons at some point in our lives. Let those you love know that even if you don’t understand what they’re going through, you’re there to support them. Remember- you never truly know what someone’s going through, even when they don’t look sick or their “labs look normal”.
If you’d like to learn more about EDS or other invisible illnesses and how to support people living with them, please check out the links below.
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