October is Dysautomia Awareness Month and if you are reading this then you are probably a part of Dysautonomia Support Network. DSN has been on a roll with our campaign, #sheddinglightondysautonomia. Our campaign this month is about sharing about dysautonomia and shedding light on this illness that many people are unaware of. So, it seemed natural that our Weigh in Wednesday Post this month should be about just that. Many of us have people in our lives that do not understand dysautonomia. I asked our Divas and Dudes what they would like to share about dysautonomia and what they wish was more understood. Here is what they had to say:
Linda T- Fatigue
Mickey S.- It robs children of their childhood.
Karen M- The struggle is real ... Attempting my first flight since diagnosis, so much to think about.
Tiffany T- I try my hardest to hide my symptoms as often as possible. I lie and say I’m ok when I’m not.
Natasha- Heart pain
Jo B- Medical support is hard to find!!!!
Sarah W- You can't just push through your symptoms.
Pilar C- If I don’t think about what’s going on in my body, and be cautious I will fall on my face and maybe on you.
Kelliann G- It can severely affect cognition, memory, focus, etc... and isn't limited to the physical body (of which the brain is a part, but your "mind" can be affected as well).
Nancy N- Hardly walking ...its a cane kinda day, very weak and shaky.
Amy E.- My husband is supportive but doesn’t understand it. I don’t know how to change that.
Madi P- I wish my friends and family would understand that this is a real problem... a real struggle.. I hate when people ask what’s wrong and they have to try and one up me or tell me they go through that too. They don’t understand, and just roll their eyes.
Emi M- My dad wasn't supportive and would be mad all of the time or ignore what was happening. It hurt my feelings so much because I didn't want any of it to happen either and it made me feel like it was somehow my fault. When I got older I realized/have assumed that he was mad because he couldn't fix it and it's not what he wanted for me. The thing is, it's not what I had planned for myself either and his negativity and selfish reactions didn't help. It's not that he wasn't allowed to feel, but I also think there are times and places (and people) where it is more appropriate. You go to a therapist about how someone in your family stinks, you don't talk about it in front of them. I was going through enough just dealing with my own emotions and what felt like the burning wreckage of my life. I didn't have time or energy to process his emotions as well or even try to put them into context.
Shawna M- It makes 'planning ahead' an impossible necessity. I must plan ahead, rest ahead, bathe ahead of time, etc. Even with, I can't make any promises. And just that can bring depression & anxiety into the package deal.
Amanda G- The fatigue is real, and different from a "normal" person's fatigue. And this condition affect so many systems of your body....new things constantly seem to be breaking down.
Our members made some very good points and I am so proud of them for sharing their truth and doing their part to shed light on dysautonomia. This illness can manifest in many different ways. For me, I wish that people around me understood the fatigue. I wish I understood it sometimes! My heart and desire to be of service sometimes gets beat by what my body is willing to do. I am STILL learning my limitations. There are times when my blood pressure bottoms out and even my husband does not understand what that can feel like. There is no pushing through that but sometimes I have no choice. Someone needs picking up or homework done. My children especially do not understand it. They do not understand why I cannot go to the beach in August or I am not able to build a snowman in December. In the middle of all we go through many of us are still finding ways to live our best life. To be the best that we can be. So, even though we want others to better understand us, at the end of the day we still have to do what is best for our health. In a nutshell, DO YOU. Dys life is the only one you have.