Advocacy Ideas – Links – Resources


Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life. The goal of self-advocacy is for YOU to decide what you want then develop and carry out a plan to help you get it. It does not mean you can’t get help if you need or want it, it just means that you are making the choices and you have to be responsible for the choices you make.

How do I start to self advocate? 

Start with this article. Make a plan. What goal(s) do you wish to accomplish? Are you having issues with your primary care provider/GP ? Read this article. When it comes to Lyme, I am not going to lie, you are fighting an uphill battle! Depending on where you are and your financial situation, there are great LLMDs out there. (Mainly in the USA and Germany) but cost a small fortune! In the UK all of the LLMDs are being targeted by the GMC (General Medical Council), so most have to travel to the US or EU for treatments. A lot of people outside of the US are forced into self medicating, which is disgusting, but true.

No matter what country you are in, you need to be aware of your rights as a patient. Even though you may not get adequate treatment for your Lyme Disease, you STILL have rights! Read them, learn them!

Patient rights by country:

Start Writing Letters….

Your representatives in the government are there to represent YOU. They are elected officials, their salaries are paid by YOU the taxpayer! They work for you, so make them earn their money! Nine times out of ten, you will receive a standard, generic response, especially regarding Lyme! Don’t let that put you off. Write write write them until you receive a proper response!

Below are your representatives:

US Congress

European Parliament

Local MPs UK

US House of Representatives

AU house of Representatives

AU Members of Parliament

Other Ideas

  • Join local Lyme groups. If you can’t find one, make one!
  • Start a blog. You can get a free one at Blogger.
  • Make YouTube videos.
  • Check out Social Stories.
  • Go to protests.
  • Help raise awareness, by hosting fundraising events etc.
  • Educate yourself on Lyme! Don’t just sit back and be ‘spoon fed’. One thing that irritates the ‘movers’ most are people that are sick, but passive about their treatment, or people that wait to be spoon fed information.
  • Join social media sites and network with others with Lyme
  • Get connected – get involved!

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