The Pelvic Messenger ~ A Summary of Patient Advocacy through Blog Radio Media
A Letter to the The International Pelvic Pain Society - October 2011
By Laurie Haughton
Imagine millions of people around the world trying to have a conversation about an illness that impacts the well being and general health of their “Private Parts” - now imagine a conversation between millions of people about a well known and socially accepted disease such as diabetes or heart disease – and I ask you; which conversation would you feel more comfortable being part of?
For most people it is very difficult to talk openly even with their health care providers about symptoms that involve their sex organs, even in an age where sex and violence are common place in entertainment and news, their still exists a social taboo when it comes to talking about the health of their reproductive organs. High school students are educated on the mechanics of reproduction but many are still left unaware of how their body actually works.
With the advent of social media in it’s many different forms, individuals such as myself and my fellow hosts of the Blog Talk Radio Show “The Pelvic Messenger” have the opportunity to pick up where high school “sex ed” left off – we have the opportunity to say words like labia, and seminal vesicles, and with those words offer insight and reason as to why social taboos need to be removed from these words so that for example: a woman can be empowered to say to her doctor “I have pain in my labia”, and not feel like she is being judged!
Many doctors would agree that an educated patient is often an empowered patient that not only understands their treatment plan but is willing to follow it down to the letter, and often times in a medical setting doctors do not have the time or resources to provide this education. Outlets such as “The Pelvic Messenger” seek to ask the questions that patients don’t always have the courage to ask and doctors don’t always have the time to answer. By reaching into the medical community to find the knowledge and help patients understand not only their symptoms, but their treatment options, and other general aspects of living a life with a pelvic involved illness we, the “Pelvic Messengers” help the medical industry keep the patient’s perspective in mind.
Buy-in from the medical community into such patient based communication tools is essential, as social media has also allowed patient groups with related illness to come together globally through tools like Facebook Groups, these patients as a collective, want contact and communication with the medical community; contact that reaches beyond the clinical setting into a realm of better understanding, and acceptance. Patients would rather be guided in their research by a medical expert then spend hours on a random Google searchs sorting the facts from the bogus claims. A tool such as “The Pelvic Messenger” allows both the medical and the patient communities to communicate in a moderated setting where facts can be entrenched and myths can be dispelled.
It is based on these basic points that I urge the members of The International Pelvic Pain Society to seriously consider what patient based advocacy groups and media outlets can offer you in partnership.
As a patient, a director of my community based endometriosis support group, moderator of an international endometriosis support group on Facebook, and as a co-host of The Pelvic Messenger Blog Talk Radio Show, I can assure you that there is an active audience just waiting to listen. The question remains are you ready to answer their questions?
Submitted with respect
Laurie Haughton
Ottawa, Ontario – Canada
http://www.blogtalkradio.com/pelvicmessenger
My dear friend Elisabeth Rutman Oas has come a long way in her advocacy efforts. I admire her work and efforts. I enjoyed helping her on a past radio show and look forward to helping in the future. Here is information about her and her amazing advocacy.
(From Elisabeth)
Hello everybody,
Please check out our new website!! I still have my own site of course, but since partnering with Jessica Tomsic on Pelvic Messenger-it was decided we needed a website solely for the show.
Jessica came into my life at the perfect time. As many of you know, I had a very big surgery this past January(number 7) and it has taken me years to get to the decent place I am sustaining right now. Too much on my plate, in addition to being a mother of two busy tots lends itself to flareups of my CPP. I asked God and the universe to bring me someone perfect to partner with..someone, who like me was a go getter and cared more about helping our community than compensating the hrs it takes and viewing this mission as only a business. I needed someone who was not afraid of the work it takes. Jessica is that person and we really are kindred spirits...the show is able to flourish because I have a partner to share in the satisfaction, success and not have it become stressful. We share the same amount of passion , its awesome.
Even Better- the show has become a credible, respected and top resource for patients to get the best and most current info on chronic pelvic pain....thus also giving way for a separate singular website.
This fall Jessica and I will be representing the Pelvic Messenger show at the annual conference and meeting for the International Pelvic Pain Society. This is a huge accomplishment, as was becoming the National Patient Advocate for the IPPS.
We have a section for donations also. We are partnered with a Non for Profit to create educational documentaries about chronic pelvic pain and will be using donations for production costs. The documentary will air on PBS. Other uses for the donations will go to costs of running the show. Currently all costs have come out of my own pocket, and now Jessica's too. We do all of this work volunteer.
Please share our new website with others and take some time to listen to past shows (available anytime) and stay tuned for upcoming shows this summer!
Website:
www.thepelvicmessenger.org
you can get right to the show from our site-it is also listed below
www.blogtalkradio.com/pelvicmessenger
My site has made some huge advancements as well..there is now 13 pages of information, and videos on it. I started with only 3 pages , just 15 months ago.
Thank you to my Dad for all his time and help.
www.elisabethoas.com/pelvicfreedom
Hugs, Hope and Healing everybody
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