When I once carried a backpack of unrelated symptoms, and no diagnosis

Today, I took an unexpected trip down memory lane, and not a particularly pleasant one. It took me back to a time just a handful of years ago when I was being sent from specialist to specialist, carrying my heavy “backpack” full of odd, seemingly unrelated symptoms, worry, and an ever-growing fatigue partly from my quest for answers.

I knew I felt very off. Things weren’t right. I was losing strength and abilities I once took for granted at an alarming rate. My health was deteriorating, yet I often felt rushed through appointments because, on paper, I was a young, seemingly healthy woman with a few out-of-range lab results and what was assumed to be health anxiety. Ouch.

This morning, I needed to look up an old specialist’s report to find lab results for a current practitioner and make sure a new medication would be a safe fit for me. As I read through that report, I was reminded of the very real, scary symptoms I was experiencing and how desperately I was trying to find answers. I could almost hear myself explaining, in great detail, my symptoms, hoping this doctor would truly listen and help me figure out what was going wrong with my body.

Then I read the doctor’s assessment. There it was again — my desperation and very real issues, seemingly dismissed as anxiety about my health, with no findings related to my blood that could explain my concerns. Case closed. No answers. Just that awful feeling of being completely unheard and invalidated.

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Not just anxiety

Now, I will never say anxiety isn’t real or dismiss the terrifying stranglehold it can have on someone. I’ve wrestled with crippling anxiety myself, and I will always have compassion for anyone experiencing it because, goodness, it is so real in those moments. By the grace of God, I was eventually able to recognize anxiety for what it is and overcome it. I’ll forever be grateful for that. But it didn’t make it hurt any less when my very real physical symptoms were brushed off as anxiety.

Who wouldn’t begin to develop some health anxiety after years of living in a body that behaves so differently from those around you? Especially when you watch yourself lose important functions and abilities without explanation. For years, I was told my blood work looked fairly normal or that I was unlikely to experience serious complications from routine procedures, only to experience frightening, sometimes life-threatening complications anyway.

So yes, I had some anxiety, and I definitely have a greater awareness of my body, probably more than most folks I know. But there’s a difference between being anxious about your health and knowing something is physically wrong, even when the answers aren’t showing up on paper.

Keep searching for the ‘why’

Rereading that report today stirred up a flood of sadness and frustration I thought I’d left behind. I could remember the defeat I felt walking out of appointments, sometimes crying in the car, carrying that same backpack of symptoms, only now with a little less hope and a lot more questions. And that’s why I felt compelled to write this column.

If you’re still in that chapter of your medical journey — where you know something isn’t right, but can’t seem to get anyone to connect the dots — I want to acknowledge you. Maybe you’re dealing with a multitude of seemingly unrelated symptoms, you’re getting passed from doctor to doctor, or being told there’s nothing wrong because your tests look “normal.” Maybe you’ve even started questioning yourself because you’ve heard it so many times. Please know you’re not alone. I was there once, too.

It’s an incredibly defeating experience, especially when it happens time and time again. But try not to throw your hands up, resigned that this must simply be your lot in life. Harness your inner resilience and the positive mental attitude I wrote about last week, even on the days when you’re exhausted from advocating for yourself.

I kept searching, trying to find someone willing to look at the bigger picture, and eventually that perseverance led me to answers, including my diagnoses of hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, and mast cell activation syndrome. Having those answers didn’t magically make my symptoms disappear, but it gave me something I hadn’t had in years: an explanation for so many of my “whys.”

Whether you’re dealing with a connective tissue disorder, autonomic dysfunction, another chronic condition, or something that hasn’t been identified yet, please don’t lose faith. What you’re experiencing deserves thoughtful investigation, so keep taking care of yourself, asking questions, and trust your gut enough to speak up when something doesn’t feel right.

Because sometimes, simply having an answer to “why” can bring a kind of healing that years of living in the unknown never could.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.