A pilot self-advocacy program by Awareness for POTSies

Rachel, the founder of Awareness for POTSies, has developed an online pilot self-advocacy program as a part of her doctoral training at The George Washington University.

It's free to sign up at the moment.

https://www.awarenessforpotsies.org/self-advocacy-program

I'd like to warmly recommend this to anyone living with dysautonomia

I'm doing this program at the moment, I'm a bit more than halfway through and pleasantly surprised. I've never come across anything like this before, it's a hugely valuable resource.

This is exactly what I would have needed when I first fell ill and during the first few years. I'm finding it very affirming, compassionate, empowering, informative and helpful.

Would love to see something like this for pwME too.

 

Sorry, I'm unable to summarise or write about it in a way that does it justice.

There are modules on What is POTS?, self-advocacy basics, POTS self-advocacy in medical settings, self-advocacy with friends and family, and on self-care.

I loved this quote, it says a lot about the perspective it is written from "We set people up for more pain and suffering when we don't give them the tools they need to advocate for themselves in informed, empowered, and impactful ways."

I appreciate that they include sources to all the scientific studies and articles they refer to.

Another quote I really liked "Self-advocacy allows you to represent yourself in a way that claims your space, your needs, and your voice, consistent with your values. It allows you to take back your power in situations that could otherwise leave you feeling helpless, powerless, and voiceless. I believe it is a non-negotiable requirement for those living with poorly understood chronic conditions like POTS."

Among other things, it talks about the consequences of stigma and circulating misinformation, and how we can try and handle that.

Lots of good and useful questions for self-study/reflection.

It also gives lots and lots of very concrete examples of what to say and how to say it in lots of different situations. Very real and down-to-earth. No toxic positivity. The tone is very encouraging and supportive, never talking down to you or making it seem easier than it is.

Sorry, can't explain better.

 

Sounds like the sort of thing we should all (all those with various diagnoses or misdiagnoses) be joining together to say ‘no more’ on,

particularly no more on the silencing is then putting words in our mouths that the misinformation or worse than useless pseudo treatments are good for us or we have ‘stress’ etc

it’s definitely needed to make those who stay silent because they are in coercive situations with the medical professions and hangers on professions given power (all those with me/cfs from certain generations and who don’t have a good income either from a very supportive partner or pension etc I think are included in that and even then you have to be careful not to upset the vindictive because you need treatment or access to other services fir other things)

I’ve been at groups where everyone agrees somethings useless but things are so bad research wise there is nothing to suggest easily and no one is in a position left to fight … except for the one person whose biggest issue is depression and feels compelled to fill the silence with saying something nice about when they got offered an add-on that didn’t work anyway like CBT.

you can see how we all get manipulated because anything else is silenced by perceived threats.

and no one should be the one person alone dxhaustedky trying to get the right words to not get it twisted back at them.

if everyone is saying to stop slipping the made up crud that just undermines us and was slapdash off the shelf from the top of a well person with no empathy thinking of themselves experience. That it’s time to cut those who won’t drop it and hand the money and mic to those who can and will do the work properly with all the hard yards to find the illest and actually understand the disease they are commissioned to help with and one day be more helpful for

well I think we all need to be getting together as a movement

and making people feel brave in calling it out because hopefully they aren’t being undermined by peers (there will always be a few for different reasons but if we can get the rest to just sign up to the right thing)

it’s only asking for what everyone who hasn’t been in the dystopian nightmare sssume medicine does already as plain basic etiquette for everything

and I think it’s important giving they lump and dump into functional or MUS etc that we all do it together. Plus there is overlap (which is why calling me/cfs an ‘illness of exclusion’ rather than ‘defined by PEM’ I think is a real issue eg pwme can then get iron deficiency and still have me/cfs and other illnesses) where someone might have two or more of these.

 

I am puzzled as to why the module is free but you have to sign up and do it in three weeks.
Is the information being input being used by someone and is the covered by an ethical board?

The website may be affirming but a lot of it does not look to be accurate or based on evidence. We are having the same problem with ME/CFS educational material. A lot of it is misleading.

I would just like to warn members that this does not look like reliable medical information and as an exercise in building the credibility of POTs it may backfire.

 

Did you actually read the material that is being offered? Did you look at the actual sources, the scientific articles that are referenced? Or are you judging based on something else?

The reason you are asked to give input is that this is a pilot program, and the survey is to evaluate participants' experience of the program, to see how it can be improved further before launching it. The input you are asked to give is questions like "I believe it is important for people (with POTS) to learn as much as they can about their illnesses and treatments." (strongly disagree, disagree, neutral, agree, strongly agree), and "Why do you feel that self-advocacy is an important skill to allow for increased access to safe and effective medical care?".

Personally I don't believe there's any reason to warn people about reminders like "you deserve access to safe care", or questions to reflect upon like "Do you have boundaries right now that have been supportive and helpful?".

 

I spent about half an hour going through the material on the main website. A lot of it is not reliable. Although there are scientific articles they aren't necessarily good or helpful science. ME/CFS and POTs are areas where there is a huge amount of muddled thinking.

This sounds uncomfortably like the evaluation of the PROMS project from Sarah Tyson in ME/CFS. I can understand that it would be useful to get information on clarity of the presentation. But asking whether people agree it is important tolerant as much as they can seems pointless. Most people are bound to agree, regardless of the module content, and miss the point that learning about 'POTs' may not be very helpful if the medical scientific community is not sure it is a useful category.

For sure nobody is going to warn people against saying they deserve safe care. What is not at all clear that the concept of POTs leads to safe care. It tends to lead to being given untested and possibly dangerous treatments by private practitioners, like fludrocortisone.

I fully understand that people may find sites like this reassuring but if the sites are misleading people surely it is important for it to be flagged up? This isn't good science, or reliable medicine.

 

Other than the landing page (which I note has automatically populated the email field at the beginning of the survey with my default Gmail account), I haven't looked at the site yet. But the use of "POTSies" sets my teeth on edge.

People calling themselves "Spoonies", "POTSies", "Bendies" or "Zebras" or using the Twitter/X Giraffe symbol for so-called "MEspine" makes me cringe. Now that PEM seems to mean just about anything anyone wants it to mean, it's only a matter of time before we start seeing "PEMies".

I find it infantilising.

 

So, just to clarify, you are criticizing the program without even having looked at the material or what the program is actually about?

 

I 100% agree, I feel exactly the same about this kind of cutesifying. In Sweden some people call pwME "emmisar" and I find it extremely cringey.

 

This program is not about treatments.

 

Again, the program is not about treatments.

Can you all please at least look at the material in question before you criticize it?

I'm leaving this discussion now.

 

I agree. Without being able to see the self-advocacy advice it is hard to know how useful it would be in general terms for self-advocacy. How would one test whether it was helpful or just made professionals more unhelpful? I have no idea but my gut reaction is that it might backfire badly.

 

I can't look at the module without pretending that I have POTs as far as I can see.