If you have Dysautonomia, you have probably heard at some point “Dysautonomia isn’t real. It’s all in your head.”
I’ve heard it. I’ve read countless posts in the support forums from fellow sufferers that a misinformed physician (of just about any and every discipline) or acquaintance has told them Dysautonomia doesn’t exist.
Anxiety, stress, any number of psychological disturbances – drug dependency…you’ve likely had your symptoms (or those of a loved one) blamed on one of these things or blown off and determined to be either non-existent or not significant.
After compiling our favorite Dysautonomia Awareness Gear for October and reading yet another post from a fellow frustrated POTSie, who was feeling defeated after being told (again) that Dysautonomia ISN’T REAL…
The Dysautonomia Is Real clothing and product line was born!
All proceeds in the month of October will be donated to Dysautonomia International! Starting in November, 40% of proceeds will go to Dysautonomia International to support research and the dysautonomia community. (As the product line creator, a portion of each sale – different for each item – is paid to me. I will then pass on your financial support to Dysautonomia International.)
So far, we have four product lines, designed to make you smile, give you encouragement, and to enlighten others to the real and disabling existence of Dysautonomia (which is the dysfunction of the autonomic nervous system, for the record).
Until 1869, ‘the West’ didn’t believe in the Giant Panda. Although local people had been aware of the existence of these animals throughout history, westerners hadn’t been convinced. Science said “No proof, No Panda.” Dysautonomia sufferers are frequently told by uninformed physicians and acquaintances that the illness just ISN’T REAL. It is our goal to spread the word that it is, in fact, a legitimate condition. This little panda wants to join the fight! Share a smile and a little knowledge all at the same time!
Until 1902, ‘the West’ didn’t believe in the Mountain Gorilla. Although local people had been aware of the existence of these animals throughout history, westerners hadn’t been convinced. Science said “No proof, No Gorilla.” Dysautonomia sufferers are frequently told by uninformed physicians and acquaintances that the illness just ISN’T REAL. It’s all in their head. It is our goal to spread the word that it is, in fact, a legitimate condition. Share a little knowledge and sport some Dysautonomia Awareness Style with the Gorillas Are Real clothing and product line!
We fall down. Sometimes we never make it ‘up’ to begin with! But we have created the Stronger When You Fall clothing and product line to remind us – and all POTSies – that sometimes falling down leaves you stronger in the end – NOT weaker. Just as an acorn must fall down to grow into the mighty oak, when we fall (or pass out, or black out, or never make it up to begin with…) the battle to never give up challenges us to grow ever stronger together. You’ve got this…
We all have days when pulling the blankets over our head and wishing it would all just go away feels like our best option. The Owl Never Give Up clothing and product line was created to give you a little encouragement to keep going on days when it feels like too much. Take a good look at the worm the owl caught…it just might give you the little smile you need today.
We have more ideas that we are tossing around, so keep an eye out for more designs and options in the future. Awareness makes a difference. This month, which happens to be Dysautonomia Awareness Month, take some time to spread the word!
I went to a new patient visit with a local neurologist this week. I had very little hope that I would walk away with any benefit from the visit, and had every expectation of being treated like a person who needs anxiety medication instead of pain medication – or even better a ‘drug seeker.’ It happens. Usually it is due to lack of information and accurate understanding of Dysautonomia (and Ehlers-Danlos, which is my primary condition).
My new doctor actually knew about both conditions, believed me that I was in pain and needed help, treated me with respect and compassion, and sent me away with hope and a plan. Wow. I almost hugged him. He had been one of my last resorts, and while still clinging to the hope that he would be helpful – I had gone into the appointment ‘not holding my breath’ based on previous experience.
Thanks to someone teaching him accurate information- or providing information that he had cared enough to study at some point – he was able to help me.
Awareness is KEY and we can work together to get the word out. Maybe this month sharing a blog post, sporting some dysautonomia gear, or taking information to your local physicians and out in your community will be just what someone out there needs to be the difference for you or a fellow dysautonomia warrior.
We’ve got this. We can make the difference. What are you doing to spread the word? (Really – tell us! We want to know!!) 🙂