Dysautonomia Bill of Rights

[SunsetParadise19]

Hi all,

I found this many years ago on the internet and have been hanging on to a hard copy. I searched for it this morning, but the website it came from is gone - it was a basic informational website about dysautonomia designed by some nurses. It really helped me out when I was first diagnosed, so I want to share it with you. I will type out the good parts for you!

It's actually quite long, and it mentions things that many of us already know just from being DYNA members. So, I am going to type out the friends and family parts. I feel like it helps to have this kind of thing written out sometimes, even though we already have most of these notions inside of us. It was written by a very smart nurse named Rita Vargas (want to give credit where credit is due!). I hope you think it's as great as I did - I found that it really helped open the lines of communication with my family when I first became POTsy!

Introduction: This Bill is written on the premise that those with Dysautonomia are people that suffer from a chronic illness, not Dysautonomics that happen to be people. This Bill is not enforceable by law. It is not written with the intention to coerce. It is written to maintain the dignity, self-respect, self esteem, and integrity of every person that suffers from all or any forms of Autonomic Dysfunction. (Mandy here: I personally would have changed "suffers from" to "lives with", so that's how I choose to read it. )

1. People with Dysautonomia have the right to feel safe and accepted in their home environment.

2. People with Dysautonmia have the right not to be compared to healthy individuals, others with Dysautonomia, or others with chronic illnesses that differ from Dysautonomia.

3. They have the right not to be expected to participate in unrealistic household chores or responsibilities that cause an episode, anxiety, or pain.

4. People with Dysautonomia have the right to support and understanding from family and friends, not discouragement because of their inabilities.

5. People have the right to discuss their disease process or not to discuss their disease process with friends and family.

6. Each person with Dysautonomia has the right to sleep according to his/her needs without labels such as lazy or depressed.

7. Every person with Dysautonomia has the right to a flexible, guilt-free, home schedule regardless of the family schedule. (IE: eats small meals every 2 hours instead of 3 large meals with the family)

8. Family members with Dysautonomia have the right to remain free of guilt when refusing to participate in a family outing/activity.

9. Every person with Dysautonomia has the right to be loved for the family member that they are, not pitied for the disease process that they suffer from. People with Dysautonomia have the right to coordinate their medical, work, social, and home environment to the best of their ability and without the interference of family members.

10. Every person with Dysautonomia has the right to seek professional counseling or ask for professional counseling for emotional needs, without disapproval from immediate and extended family and without derogatory labeling.

11. Every person has the right to access Local, State, Federal, and private agencies for patient advocacy in medical, work, community, and home environments.

Mandy here again, these are a few of my own additions:

1. Every person with Dysautonomia has the right to fully love and acccept themselves as they are, and feel proud of the fact that they are strong and have gone through a lot of personal growth as they deal with their own symptoms. They NEVER have to feel guilty for any aspect of their Dysautonomia ever!!

2. Every person with Dysautonomia has the right to feel worthy of, and to accept, love from others and have healthy relationships through out their lives, including marriage if they so choose.

3. Every person with Dysautonomia has the right to feel great, look great, go out and have lots of fun one day, but still feel symptomatic the next day and need to lay down without being judged or questioned about the validity of their illness.

4. Every person with Dysautonomia has the right to have accommodations made for themselves, such as home-schooling or the inability to hold down a traditional 9 to 5 job, while still being able to get out sometimes to have dinner, see a movie, hang out with friends, go to a concert, go on vacation, or whatever else they want to do, without being made to feel that it is wrong to both care for themselves and still have a life and enjoy some fun once in a while!

5. Every person with Dysautonomia has the right to vent when they need to - they can cry, yell, punch a pillow, and feel angry and lonely once in a while without feeling badly for blowing off steam.

6. Every person with Dysautonomia has the right to have access to friends who love them for who they are and to feel accepted no matter what by participating in DYNA!

Please, feel free to add you own rights and share your thoughts!! I know this was a long post, but I hope it was helpful! Also, if you feel that you are not enjoying these rights in your relationships with your family and friends, feel free to either talk about it here, or PM me anytime to chat. Have fun and take care!

[xxBrittany]

This is something to truly think about!
Thanks for posting this.

[ReineDeLaSeine14]

Thanks for posting this Gwen!

[xxBrittany]

Ha. I'm still reading this on a daily basis.