Wednesday 31 August 2016

Seeking Guest Posts for Dysautonomia Awareness Month: Theme this year is DIVERSITY

[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at]

Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices. 

This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups.  The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.

Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.

So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.

Bring on the DIVERSE voices!


If you fit into one (or more) of the  groups below (or if there's one I've missed and you want to suggest) drop me a line. 
  • Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month)
    I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
  • Men
  • People of Colour
  • Culturally and Linguistically Diverse Groups
  • Rural or remote
  • Over 40 years of age
  • Disabled
  • Countries where there is little to no awareness (I'd love to share stories from areas such as South and Central America, Europe, Asia, and Africa, I do get email queries from patients in these areas desperate for information, so I'd love to share more of their voices). 
*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.

How to Submit your story:

I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.

Submissions must include:
Short bio max 100 words.

Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.

Max 500 words.

12 Times New Roman 

Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).

Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.

I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.

Send to rustyhoe (at) livingwithbob (dot) com

Submissions close Saturday September 24th 2016

Looking forward to reading and sharing.



  1. Thank you! I'm glad someone prominent in the dysautonomia community is saying what many of us have been thinking.

    1. In Diversity - charm! And the world faces.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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