Imagine waking up one day, and everything being ripped out from under you.

In a blink of an eye everything changes. Everything you love to do suddenly you can’t do anymore.

Scared, worried, unheard… misunderstood. Doctors clueless as to what is wrong.

Anxiety rising high, as that is the only diagnosis I hear. Knowing that this is far from normal, and anxiety would be treatable and better to have but this… THIS monster is much bigger.

Tears shed as my heart beats faster and faster with every inch my body rises. Why is this happening? Am I crazy?

Dizzy, faint, lightheaded… my daily life as the people around me think I’m lazy, but if they only knew the struggle. The struggle to get up, to take a step, a shower even. The things I took for granted.

My children… asking why mommy cant do the things she used to. The innocence in their eyes, the empathy they try to show. My explanation feels useless, and I’m hurting because I’m not the mom I use to be. I’m sorry.

My family… being a burden to them is my constant guilt. How I feel is my daily talk. I feel alone. I am alone. No one can understand unless they go through it. Sympathizing just makes me angry, though it shouldn’t. How could someone without POTS even begin to get it?

Friends… let’s go out! I sit there and watch them have fun, as I’m downing water just to avoid fainting. I’m jealous and it’s wrong of me to be. I would never wish anyone this. I’m sad because I’m the one sitting in the corner, wondering what I would be doing if this monster didn’t get me.

You don’t look sick… some things you just can’t see. You look perfect on the outside, but on the inside, there is a disaster. I’m in a constant battle with my heart. Every second, every hour, every minute of every day.

A doctor… a doctor that takes you by the hand and believes you… a miracle. The words, “yes, you have POTS.” The I knew it was more than anxiety, it was more then something simple.

The truth… there is no cure at this current time. There is medicine to help, but each person is different. The words you may need a wheelchair, a shower chair and medicine for life.

My mind… why did this happen to me? From pregnancy, Mono and maybe even my car wreck my doctor replied. What about my life? I’m only 22. POTS doesn’t discriminate.

My faith… dear God, what did I do to deserve this? Please take this away, please, I’m sorry.
A daily prayer to Him, wondering why and how this was in my plan.

A future… what now? How do I move forward being so sick? Pushing through for my family, for my babies. I’m their hero. I cant look weak. I have to be strong.

A story… to be continued.

Guest author Emily J. is 23 years-old and living with postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. She hopes this will let others know they are not alone in feeling this way about living with dysautonomia.

Remember, you are never alone on this journey. Dysautonomia International offers support groups to help people impacted by dysautonomia connect with others who “get it.” Visit www.dysautonomiainternational.org/support to find a support group.

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