EDS Awareness Month Challenge – Day 5

The Dysautonomia Support Network, in honor of EDS/HSD Awareness Month, is doing a daily my awareness / my story challenge. When I was adding my little story to Facebook for the challenge, I realized that this one hit a nerve pretty hard. I thought I should just go ahead and share it here as well.

day5EDSawareness

Day 5. Describe how invisible illnesses EDS/HSD subject you to judgment from strangers, friends, and family. Join us in sharing your story with our #MyAwarenessStory prompts each day. Share your story using the hashtag combo #EDS #myEDSstory #MyAwarenessStory #DysSupport OR #HSD #myHSDstory #MyAwarenessStory #DysSupport

This is one I could have done a video of because it’s one of those that hurts your heart. I’d just be a blubbering mess though lol. When you constantly say you’re in pain, people stop listening. They get tired of it. Then they judge you for it.

In high school, my teachers judged me. They didn’t believe that I was very ill. Really in pain. Even the day the principal had to call 911 b/c I collapsed in the middle of the hall and be taken to the hospital, they still didn’t believe. I clearly remembered two teachers who told me I wouldn’t make anything out of my life because of my “so called illness.”

Friends and family get tired of canceled plans. They may not even realize they are judging me for it. I can understand that they get sick of making plans and then last minute (very last minute) things have to change. It’s one of the ways I’ve lost so many friends. Lost so many connections.

Work. Work is the hardest. Your coworkers judge you for being out even when you work from home plus doing an extra 4 hours a day to make sure no one has to cover your job. Your managers, especially those micro-managers, get tired and stop believing that you’re in pain. Stop believing that you’re at doctor appointments, physical therapy, etc. It gets worse when you have that one good day, and you’re able to dress to impress, wear a full face makeup and do your hair – they don’t understand why you’re not on the ball everyday’ though they have seen you go from a stellar employee to trying to survive each day. They go from friend to manager, to enemy. They don’t understand how hard it is to have to physically call them when you’re on your way to the ER at 4 am. Then when you do – and you’re sobbing or barely able to bring together a coherent sentence they think you’re acting “childish” or “overly dramatic.” An email won’t do. A text doesn’t satisfy their needs anymore. They manage your FMLA down to the minute as if you’re trying to steal time. They decide that you are faking it or become ridiculously suspicious when you can do some work at 3 am because you are unable to sleep and might as well try to cover your job.

I also just realized I didn’t even talk about the judgment you get from others if you happen to use your handicapped parking permit on bad days.  Some days it takes everything to just walk from your parking spot to the front door. You’re young and maybe not in a wheelchair – you don’t “look sick”.  Luckily I have not been a victim of the nasty conversations or notes on the car but the fear is there every time I use it.

Wow. I guess this one meant a lot to me. The judgment hurts. Mainly because I can’t help being sick. They may understand, but it still hurts them since I canceled. We have to remember their feelings too while still taking care of ourselves. It’s a delicate balance.

I’m doing a little fundraiser for this month in honor of Ehlers-Danlos Syndromes Awareness Month. Please feel free to check it out. I’ve posted my other day challenges as well. Click on the image below for more info (it will take you to a Facebook Fundraiser).

ESD

Click on the image to donate.

Tree of Hope

Please help me raise funds for Dysautonomia Support Network; an organization near and dear to my heart.

This amazing charitable, non-profit organization helps support patients and increase awareness of an illness of which I suffer. It would mean a lot to me if you could help – plus this t-shirt is adorable!!

imageAren’t these shirts cute?? Plus you’ll be helping a great cause!

imageA little about the Dysautonomia Support Network:

imageThe Dysautonomia Support Network is a U.S. based 501 (c) (3), non-profit organization providing support, resources, education and advocacy for patients affected by the many forms of Dysautonomia and related conditions such as Connective Tissue Disorders, Mast Cell Activation Disorders, Chiari Malformation and Gastric Motility Disorders.

Volunteers are trained to help patients through every stage of their journey, from diagnosis to advocacy. THey promote a positive but realistic environment and a sense of community in our national and state chapters.

What is Dysautonomia? Well, here’s the short answer:

Dysautonomia (or autonomic neuropathy) is a term for various conditions in which the autonomic nervous system (ANS) does not work correctly. Dysautonomia is a type of neuropathy affecting the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels.

There is no cure. There are only a few treatment options available. Very few  doctors have an understanding of this illness and even fewer specialize. It took me 10+ years of seeing countless doctors before I was diagnosed and another 10 years before I found doctors who  are actually able to work, treat, and manage my illness.

 

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I hope you grab one of these great shirts as your donation will help spread awareness. Help educate doctors and patients alike. Help research new treatments and look for a cure.