The word “advocate" can sound like a lot of pressure- but in reality, it means advocating for yourself and others at a pace that feels comfortable for you. Whether you are sharing your story with family and friends, or writing letters to your political representatives, every action counts towards driving change for those living with a chronic illness or tick-borne disease.
Below are a few tips for beginning your journey as a advocate- we hope this helps give you guidance and direction in your quest to improve lives!
Share your story:
Social media can be a blessing and a curse- but one of the many blessings from social media platforms is that we can help others feel that they are not alone in their chronic illness and/or Lyme disease journey. Start by slowly sharing your disease diagnosis with your friends, family and loved ones at a pace that feels comfortable to you. If you feel up for it, share your journey on social media to connect with others you may have never had the chance to meet. You never know who you might be helping!
Have strong personal boundaries:
While it can be very exciting to see yourself helping others and driving change- you cannot forget to take care of yourself in the process. Try to set a certain amount of time per week- one hour, two hours, etc.- that you will spread your advocacy work out over a period of time to prevent fatigue. When your plate is full, say no to requests and opportunities that could set you back in your health journey.
Remember- you are also suffering from the disease you are advocating for, and you have to be your #1 priority!
Share factual education:
Learn the ins and outs of your illness from the ground up. Information if plentiful online, but that does not mean it is factual. Research your disease on an accredited website (for Lyme disease- ILADS, GLA + the CIH blog are great resources) to make sure you are sharing current, science backed information with your community. You never know- this could lead to helping someone else receive a diagnosis for mystery symptoms they have been experiencing. Some things you may want to look up-
-How many people live with your illness?
-How many people are diagnosed each year?
-How do you contract your illness?
-What is the treatment for your illness?
-Is there a cure for your illness?
Sign up for advocacy programs:
Advocacy programs can be a great place to begin your journey as a chronic disease advocate. Start small by signing up for an organization's newsletter to get current alerts on what is happening in the community. For example- if you have Lupus- Lupus Foundation of America sends out regular emails with written templates to send to your Congressmen, social media activations and updates on the newest research.
The direction from advocacy programs takes away the guessing work of what the “best” way to advocate is and mobilizes an entire community at once- driving change and bettering lives in the process!
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This article provides guidance on how to become an advocate for chronic illness, encourages sharing personal stories, and Flappy Bird encourages participation in advocacy programs to create positive change.
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