When Being Undiagnosed Means You Have to Save Yourself


I’ve learned a lot over the past three and a half years of living in medical limbo… unfortunately, the reason for my decline is not one of them.  What I have learned though is that no one is coming to save me. Similar to Disney movies where Prince Charming rescues the Princess or in folklore and fairy tales where the damsel in distress is, well, put out of her “distress,” I’ve been holding my breath for the “Doctor in the Bright White Coat” to show up and save me from this misery.

I’ve had to come to terms with the fact that no one is coming to save me.

I’ve seen a lot of “white coats”… a lot! I’ve walked into the doctor’s office dragging the shackles of my illness, praying that one of them will have the key to unlock and release me, the potion for me to swallow, the wand to wave over my head. So far though, not one “key” has fit, no concoction has materialized, the wand is a myth. I leave weighed down with the same, and sometimes heavier, chains than when I first walked in.

They can’t save me.

My friends can listen with an empathetic ear, nod and feel bad for me… but they can’t save me.

My husband and kids can offer as much help as possible to keep our house running as smoothly as possible… but they can’t save me.

Individuals on social media sites who share similar struggles can mourn with me, compare experiences with me, offer advice… but they can’t save me.

Physical therapists can guide me and teach me exercises with the hopes to strengthen what has been lost… but they can’t save me.

What I’ve learned is that I have to try and save myself.

The hardest person to save from drowning is yourself. You have to gather your wits, stop the panic, look around for a lifeline and work with what you’ve got. It can feel like the life preserver has a hole in it, a slow leak. And all the effort of puffing air into it can feel counterproductive.

But you have to keep trying, because doing absolutely nothing, you will surely sink.

So, because my body is failing… I have to work extra hard to “exercise” and train around my failing body parts. I have to put in the time and effort, I have to struggle through the tears and frustration. I have to save myself.

Because I have great difficulty shopping in stores, I’ve had to use online grocery shopping and delivery drop off/pick up. I have to save myself.

Because the simplest tasks can take every ounce of energy out of me, leaving me extremely fragile and ill, I have to measure and weigh every move knowing I will pay dearly for it later. I have to save myself.

Because simple things aren’t simple anymore, I have to think of workarounds, think outside the box, put on my creative thinking cap. I have to save myself.

Because dietary triggers have yet to be identified, I have to research and read, trial and error, track and monitor, everything I eat. I have to save myself.

Because it can be easy to fall into desperation and despair, I have to dig deep for the positive, find things to lighten the mood and situation, mentally escape from my body sometimes. I have to save myself.

The medical bills can pile up and overwhelm me, and stretch and strain the family budget, and pour salt into the wounds of paying money and getting no answers, nothing on return. I have to make arrangements and keep track of when which bills need to be paid and to whom, like a small business accountant. I have to save myself.

I’m on a daily, hourly, minute by minute mission to save myself. We have to save ourselves.

black and white painting of a woman on a unicorn riding toward a castle

And if I get my lifesaver fully inflated and patched up enough to save myself, if that “unicorn doctor,” the one in the bright white coat, does show up? I promise I will share with you the measures I took, the answers I got. But in the end, the only person who will get you to that point, the only one who can truly save you… is you. Don’t ever give up that power.

Because sometimes we have to save ourselves.

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