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17 Things People With Dysautonomia Want You to Learn During Dysautonomia Awareness Month

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October is Dysautonomia Awareness Month, so it’s especially important during this time to raise awareness and promote understanding of the condition and empathy towards everyone who lives with it. Dysautonomia refers to a group of disorders in which the autonomic nervous system malfunctions, causing cardiovascular problems, breathing issues or fainting. Symptoms can be serious if not properly managed and can have a significant impact on a person’s ability to go about their everyday activities

To help others better understand what life with dysautonomia is like, we our Mighty community with dysautonomia to share what they want others to learn during Dysautonomia Awareness Month. Let’s shed some light on the realities of battling this disease.

Here’s what the community shared with us:

1. “I may show up and be smiling and happy, but there’s often a storm raging in my body that I am fighting to keep under control.” – Nikki W.

2. “Companionship means a great deal to us. We miss being able to hang out at events with our friends… but a quiet night in can be an option to show you are there for us.” – Sharon P.

3. “If changing my diet, drinking special water, taking vitamins, magnets, chakras, alignment or anything else was going to cure me I would be cured by now because I have researched and/or tried it all. It is not ‘in my head,’ I can’t ‘fake it till I make it’ and it is not a reflection of the amount of effort I give. My body struggles to do all of the things most do on automatic without any notice and something as simple as a shower can deplete my energy for the day or longer. Just being there, showing up, and being with me doing what I can is a priceless gift.” – Bethany S.

4. “My fast heart rate has zero to do with anxiety.” – Jen M.

5. “Just because I look good doesn’t mean I feel good. Makeup and cute clothes work wonders but they don’t fix the inside. And just because you saw me do something ‘normal’ one day doesn’t mean I’m cured. There is no cure and our symptoms fluctuate day to day, hour to hour, minute to minute.” – Em J.

6. “People don’t understand that when they say ‘I know how it feels’ it makes us feel less valid, and bad for talking about what we’re going through.” – Cristina M.


7. “I want people to know that I have to explain what it is to almost every doctor, nurse [and] healthcare professional I come in contact with. Even then, they don’t always understand what it fully means. And I don’t blame them, it took me a while of researching and reading, connecting with others to understand it. Now most of my doctors look to me to be an expert on it. Because I am.” – Meg S.

8. “My heart doesn’t race because I am overweight. It races because it does not receive the proper signals from my autonomic nervous system.” – Donna-Jean I.

9. “I genuinely know that those of you who say ‘get better soon’ or ‘get well soon’ [have] good intentions. But, it’s incurable. One day maybe my symptoms will at least slightly improve. Until then, daily dizziness, blacking out, nausea, ringing in my ears, restless leg syndrome symptoms, etc. will continue.” – Savannah E.

10. “I want people to know how much every bit of their help is appreciated, especially those who have been there for me in my hardest times.” – Katelyn B.

11. “I want people to know that I don’t mean to walk slow and hold up the crowd at school. My heart is just beating so fast I can’t see straight or feel my legs most of the time. Please go around me.” – Caroline L.

12. “Just because you cannot see what is wrong or why I need [disability] parking or am training a mobility dog does not mean it isn’t real. This is scary, and I wouldn’t wish it on my worst enemy.” – Katie P.

13. “We are great friends because we know what it’s like to not have any. This illness can be very isolating. We so badly want to do what you can do but our bodies don’t allow us.” – Em J.

14. “I don’t fake this for sympathy. I don’t want your sympathy at all. I want you to understand that I’m trying to do better but I will always have my bad days. The goal is just to make them few and far between.” – Caitlynn D.

15. “I want society to know that all of us who have been stricken with such a painful, exhausting disorder are just trying to survive, like everyone else, and just because we have to do things slower or differently than healthy people doesn’t mean we aren’t still equally capable.” – Katelyn B.

16. “I push myself to my limit and beyond every single day. It’s as simple and as complicated as that, honestly.” – Kourteney K.

17. “Be patient. Be kind. Be compassionate. You never know, it could be you or someone you love living with it one day. Treat folks the way you would want to be treated.” – Cassandra P.

Originally published: October 5, 2017
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