For Patients
Educate Yourself
Once you are diagnosed, learn everything you can about your disease or diseases. Unfortunately, many healthcare providers are not adequately educated to diagnose, manage, and treat patients with tick-borne diseases. You will need to educate yourself, and in many cases, educate your doctor in order to get the care you need. Find a doctor that will take the time to listen to you and that believes you and the symptoms you are experiencing. The best health outcomes will result from shared decision-making between you and your provider. Use the resources and tips below to get started. If possible, see a Lyme Literate Doctor. Lymedisease.org offers a free online search tool for finding a Lyme disease and Tick-borne Disease Specialist.
Be an Advocate
Because many healthcare providers do not understand the complexities of tick-borne diseases, you will need to advocate for yourself. Educate yourself with the resources recommended on this site and through the different support groups and experts in the field. There are a lot of mixed beliefs about tick-borne diseases and the proper way to manage and treat them. Share information and resources with your healthcare providers so they can better help you.
Don't Give Up
You might start feeling alone and isolated and that nobody understands what you are going through. This is because tick-borne diseases are invisible and in general, most people do not understand what having a tick-borne disease does to the body, mind and soul. Educate your families and friends about your condition. If you do not find the support you need from those nearest to you, find support through online social media and virtual support groups. Whatever you do, don't give up.
Join a Support Group
There are a variety of support groups available. If you try one and don't like it, try another one. They are different, so try them out until you find the one that is right for you. The Global Lyme Alliance offers a tool to find if there is an in-person support group near you. Virtual options are provided here.
Check Out Facebook Groups
There are Facebook group pages for specific tick-borne diseases and are a place where you can ask questions, have conversations, or just read about other people's experiences. These can help you navigate your diagnosis, symptoms, management, and treatment options. Because there are many, check out several to see which ones are the best fit for you. Here are a few groups to get you started.
