I had a lot of fun writing my series on Sebastian, my new service dog the past couple of weeks. I'm sure I will be writing more about him in the future, but this week I am going to focus back on the invisible illness community. Today, I'm going to focus on the positive and negative sides of running an advocacy page on social media and sharing such a vulnerable side of your life.
The past couple of weeks I have had conversations with other warriors about how much power social media has, especially when you share in such a vulnerable way like people who advocate do. We talked about how when you share so much, you are opening yourself up to criticism and harsh opinions. Whenever we share a post on our advocacy pages, there is anxiety behind every post. What if I worded something wrong? What if this does not come across the way I want it to?
Then, as your account grows, your following grows. You are reaching so many more people. You have to make sure the information is correct or that you aren't giving bad advice. Plus, when you give bad advice and it is pointed out, you have the option to either go back and revise it/ apologize or take the backlash from people. The backlash can be hard mentally, but can easily be avoided if you proofread your post before posting, and is usually calmed down by fixing the post and apologizing. For example, Lizzo released a song a few months ago that got backlash for having ableist lyrics because she is all about inclusivity. When she got word of the backlash, she rewrote her song and apologized for how her song lyrics came across. Everyone went from talking bad about her, to praising her for being willing to change her song. (Click here to see her apology: https://www.youtube.com/watch?v=eAMql87YhvA )
With this following also comes DMs. I love connecting with people and I would not be where I am today without the support I have gained through social media. However, sometimes we have people that message us and they tell us their entire story and want us to fix it when they see that we have the same illness under control. This can be difficult because everyone's body is different and they sometimes get mad that something worked for you and not them.
With that being said, I am so thankful that I run an account like Trusting My Gut. I have gained so much knowledge about other illnesses, my own, and treatment options. I have connected with some of the most amazing people who I talk to almost daily. Trusting My Gut has brought me the best support system as well as allowed me to see how far I have come. I can look back and see all the hard times and good points in my journey. I can see the celebrations of a treatment working or finally getting a diagnosis. Even though there are some negatives to having an advocacy page, I wouldn't trade the experience for the world.