My Hopes for the Future of Dysautonomia

“There’s nothing wrong you.”

“This is all in your head.”

“Talk to a therapist about this.”

It doesn’t matter that you know your body is failing you. It doesn’t matter that you know each and every way your anxiety manifests itself within you, and what is happening to you now isn’t anxiety at all. It doesn’t matter that tears are pouring down your face as you plead for a doctor to see your pain and help you figure out what is happening to you. It doesn’t matter.

Because of the lack of education within the medical community and general population on disorders of the autonomic nervous system, it doesn’t matter. Doctors send you away with a referral to a psychiatrist or a prescription for anti-anxiety medication. It doesn’t matter that you have been down this road before and it doesn’t matter that you know, without a doubt, these won’t help.

As I sat in too many different doctors’ offices to count, I hoped. I prayed for some answers. I held my breath as the nurse called my name and I headed back into a room. Questions I’ve answered hundreds of times were asked again as the nurse made notes of this symptom and that symptom. She says, “The doctor will be with you shortly,” and I take a deep breath and pray.

“Please let this doctor see.

Please let this doctor hear.

Please let this doctor know.”

The doctor walks in, shakes my hand and asks what brought me in today. I try to explain. My heart races when I am sitting but races even more when I stand and constantly beats in weird patterns that I know aren’t right. I can’t eat due to bloating and severe stomach pain. If I stand more than a few minutes I pass out and I’m constantly dizzy. I go from too hot to too cold within a matter of seconds and there’s a constant ache in my joints. I am so fatigued that it feels like I haven’t slept in years and I can’t remember things anymore. I can’t run anymore, I can barely walk.

By the time I’m done explaining I know that I’ve already lost the doctor. He goes through my records as we sit there in awkward silence and I try to stay positive. I tell myself he sees something, I tell myself he’s made a connection. After a few minutes of silence pass he folds his hands and asks the question I dread the most…

“Are you seeing a psychiatrist? You’ve had several tests that don’t show too much to explain your symptoms. Have you been anxious?”

My hope is shattered and I can’t hide my disappointment.

I leave completely defeated. I leave still very sick with no answers. I leave feeling hopeless.

My story is not uncommon; in fact, it’s far too common within the dysautonomia and the invisible illness community.

On average, it takes six years for a person to be diagnosed with dysautonomia, when it should only take 15 minutes for a doctor to recognize the symptoms. This means more and more years of struggling for those with this debilitating illness, and while there is currently no cure, there are still treatment options to improve the quality of life of patients. Dysautonomia is not rare – it’s just rarely diagnosed, and this all goes back to the lack of knowledge in the medical community and general public.

the dysautonomia project

I’m writing this to pledge my commitment to continuing to fight for awareness, to continuing to fight for all those who struggle with feelings of hopelessness or struggle to get the medical community or even their families to believe them.

black and white photo of woman holding a note card that says 'hope'

I’m writing to tell you that if you’re struggling, you’re not alone. One day… six years will be turned into 15 minutes.

We are all in this together.

For more information on dysautonomia and how you can get involved with joining our fight, please visit The Dysautonomia Project.

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