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Could this do more harm than good?


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At first when I saw the following post on Dysautonomia International's Facebook, I was encouraged: 

https://www.iheart.com/content/2022-05-10-halsey-gives-fans-intimate-detailed-health-update-before-touring/?fbclid=IwAR392prv7DTus1cbr705T4zsvgVJR9-ibWCoWo4kGWj5tDyVx2r7zf2eLjY

This is someone incredibly famous who suffers from all the same issues as I do. 

She will bring publicity to the condition(s).

She gives hope that we may be able to over-come it. 

At least that's how I hope people will see this, especially those who know someone suffering from the condition, but don't understand it.

However, I know that if anyone in my family read this, they'd tell me to look at all she's doing with the same condition as you, but you refuse to get off the couch/out of the house. 

That's the way I'm afraid too many people will see this and it will backfire on those of us who are trying to get others to understand what we're dealing with. 

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No. Explain that it matters where you are when you get diagnosed. First, she has tons of money, got diagnosed quickly, got the best of everything, and had a treatment plan within weeks. Mine took 30 years. Second, I was in a downward spiral and was basically bedridden when I got diagnosed. She performs, has personal trainers and is paid to work out for hours EVERY DAY. She started in a much better position. What was your job before you got sick? I sat at a desk in front of a computer 50 hours a week. Doesn't bode well for fighting this disease. Third, she likely had a nutritionist and a personal chef on staff that immediately pivoted to cater to her needs. We had to struggle to figure it out. She had an entire team behind her to support her needs. We had our own families questioning our diagnosis and not understanding our special dietary needs which ends up sometimes sabatoging us.

We had to beg insurance company for referrals and to cover test. She likely did not. We are not the same. She started at 30,000 feet and fell 5,000 feet. We started at 5,000 feet and fell 5,000 feet. 

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@MTRJ75 bringing awareness about dysautonomia to the ignorant public is ALWAYS a good thing. But it is like it is with diabetes: some people can control it with diet alone, others need medicine or insulin as well. And some live relative easy lives with it and others are completely unstable. There are so many nuances, mechanisms and degrees of this disorder that we all react in different ways to it. @KiminOrlando is right - Halsey has a very good starting point and I wish her well in her journey. But we cannot compare our cases to each others - I know of many people suffering from the same diagnosis as I and they are working and minimally affected. I am disabled and homebound. The way I describe it to people when they ask is that there are differnet degrees of this and I have a bad type that is not easily controlled. That usually is enough to keep them off my back. 

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2 hours ago, Pistol said:

bringing awareness about dysautonomia to the ignorant public is ALWAYS a good thing

Wisconsin has a group that works on the Dysautonomia awareness https://racingheartsday.org/about.html they even got the Governor to recognize the disorder and he praised Aurora Health Care for the cutting edge research and treatment, OH but the irony just after that the only clinic left in the state that could diagnose and treat our issues closed. (wonder if that was insurance driven).

I am in the same boat about what @KiminOrlandosuggests and don't have the unlimited resources to get the best of care (testing and treatment) and would have to travel as no Dr in Wisconsin has a will to treat and test Dysautonomia. I did get lucky with my Gal at UW as she has an awareness of the disorder but has been hit and miss a to figuring out what works and her hands are tied as UW does not do any real Autonomic testing outside of the standard TTT.

 

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Sure, these are all things WE know and appreciate, but it won't help us with people that don't understand  us. I don't want to wish ill on her, but I almost want to say it would read better to people if she struggled and was down for awhile before pulling through or at least wasn't able to tour again so quickly (again, not something I wish). I can almost hear friends and family in my head "Now you know what's wrong with you, just figure out what made her better."

@KiminOrlandoI was a bit of a couch potato, but in decent shape (meaning I got off the couch to exercise frequently, but not much else) when Sjogren's first hit, but then that motivated me to get in best shape of my life and then POTS hit, so I don't think the working out always helps. 

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