Advocating For Neuropathy In 2017 - A No Brainer!

Today's post from paincommunity.org (see link below) is very short (just as well, it´s New Year´s Day and you´ve probably got better things to do!) but the message is important for everyone living with neuropathy in 2017. Despite everybody´s best intentions and millions of people across the world complaining about their burning feet and other symptoms, neuropathy is still off the media radar. It´s difficult to understand why but because the disease is so complex and there´s no cure on the horizon, most media people and even medical professionals would secretly rather that it didn´t emerge into the full glare of publicity. The patient however, thinks otherwise but up to now has been pretty much powerless in promoting the condition as a world/wide problem in urgent need of publicity. This article calls for advocacy, not just in organised groups but also as individuals. Advocacy basically means shouting something from the rooftops until you´re heard! There is research progress being made in all areas of nerve damage but it´s (literally) painfully slow. If we can bring neuropathy to the attention of the world´s media and nudge it to the top of documentary makers´subject choices, then it´s much more likely that faster progress will be made. If there´s one thing that pharmaceutical companies hate, it´s irritating consumers highlighting their shortcomings and guilting them into action. Let´s be irritating in 2017 / it´s in our own best interests😡
P.S. Best wishes for a happy and healthy 2017

You Are An Advocate
by Maggie Buckley | Dec 5, 2016 | Advocacy, Pain Policy
 
Wow, what an incredible couple of months it’s been. With 2016 coming to a close, it is time to think about New Year’s Resolutions. One very popular resolution in the current post election political environment is to become an advocate for one or many issues that you are concerned about.

Advocacy can be local, national, or worldwide. There are several ways to become an advocate and they all lead to cultural change. Advocates are people, paid or unpaid, who speak up for and support the wishes of themselves and/or others. Advocacy can happen in a one-on-one situation, when you’re talking to friends and family to communicate your own healthcare situation. Advocacy can be in the healthcare setting where you’re trying to make sure that you or a loved one get appropriate care. Advocacy is also calling your legislator and telling them that you’re concerned about particular legislation, regulation, or guidelines and why/how those things will impact your life or the lives of others if passed or defeated. I think of this last type of advocacy as the Policy Advocacy many people have been talking about since election day.

It is possible to become an impactful advocate for an issue that you are passionate about in either a low or a high profile way. Contacting your elected officials by phone, letter, or email is a low profile form of advocacy, with little to no public exposure. Calling the district office of your Congressional representative is a low profile way to have a big impact. It is a powerful phone conversation in which you introduce yourself by name and residence, state your issue of concern, then ask the staffer to tell the representative to support/oppose/speak out for/against an issue. Always thank the staffer for their time.

Writing a letter or sending an email to communicate the same information may be an easier way to reach out and is certainly valid if this is your comfort zone. But, you should know that the phone calls make that person-to-person connection and that adds weight to your concern. It is so intimate to hear a voice filled with emotion.

Find out who all of your state and federal representatives are and contact their district offices with the same message and keep doing it. After that first call it becomes easier to call again when another issue comes up with legislation, regulations or guidelines that are being considered.

Medium to high profile advocacy can occur by using your social media accounts to share your opinions or resources or references. Always check your sources before posting.

Advocacy can be high profile. Writing letters to the editor of your local newspapers, where your comments are published with your name has a big impact. Posting videos online is another high profile advocacy channel option, where your name and image are out there. More visibility with a consistent message on a specific issue engages people and media who will then contact you. You can call into a radio program to ask a question or share an opinion. You can write in and ask for a television reporter to cover a particular issue or a side of an issue that you feel is not being represented. You can offer to be interviewed by journalists to show how your personal story impacts or is impacted by a particular policy. Speaking out publicly is a high profile form of advocacy. This has a large impact and truly gets others involved.

With the recent election, many people are trying to interpret every press release, news story and tweet as an indication of how the incoming administration will affect the quality of their life – by changing/not changing current policy. The Pain Community recognizes this as a great time to highlight the advocacy resources at PainCommunity.org/advocacy, where you may access resources to learn how to become your best advocate or an advocate for someone you care for.

Please comment below to let me know the health and pain care issues that are of concern to you. I’d also like to know how your phone call to your Congressional representative’s district office goes.

Resources:
Find your Congressional Representative: http://www.house.gov/representatives/find/ or http://usecalltoaction.com
Find your Senator: http://www.senate.gov/senators/contact/
Find your State Legislators: http://openstates.org/find_your_legislator/
 
http://paincommunity.org/you-are-an-advocate/