I live on social media. I constantly share information about food, lupus, business, etc. It seems my day is not complete without at least one post on Facebook or Instagram. As I have shared my lupus journey, people have said things to me that were encouraging.
When I first started getting sick and had no explanation for my symptoms, I took to social media asking if anyone else was experiencing these things. The community rallied. They would offer things I should research or tell me stories of their situations with a similar symptom and what they did to resolve it. I would get messages like, “Hang in there,” “I hope you feel better soon,” and “Everything will be OK.”
After I got my diagnosis, I felt that because they helped me, I should let them in on the outcome of the months of madness that my body had gone through. My inbox lit up with others who were quietly battling, but who wanted to offer their experiences. Take magnesium, stay away from tomatoes, don’t eat processed foods, for instance.
After months of research, I made a decision based solely on my health: I decided to move abroad. That’s when things changed for me. The messages, while still encouraging, included things like, “You’re motivating,” “You’re inspiring,” “You’re our hero.” Holy hole in a donut, Batman! That was the heaviest thing I think I’d ever encountered.
For three days I completely shut down. I never expected such words to weigh me down. I felt like I had so much responsibility when those words were added. I am a praying girl, so I literally went into three days of prayer. I hardly ate or slept during those days. When I came out of hiding, I felt I needed to be more vocal and bolder about how I shared, and what I shared about the disease I was fighting. I also realized that hearing those words did not require anything more from me than what I was already doing. I already had been vocal about the disease, the healthcare experiences, and more.
I had to allow people to share what they felt. I learned to say thank you, but those words are quite humbling to me. I often remind people that I am being selfish — I’m not inspirational because I came to save my own life. I’m not motivational if no one is making changes in their own lives based on what I share. (Some people have actually made changes, and that is something else that freaks me out.)
To know that people are listening to you and taking your words as advice gives you this feeling of being really responsible to others. But again, I had to remind myself that these are adults making adult choices. Just because I said something doesn’t make me responsible for the outcome.
I am always excited when the results are good, but can I just say that hearing people say I’m motivating, inspiring, brave, and that they are trying what I suggest is definitely something to get used to. I never want to take for granted the things I share when I see that others are taking to heart what I say. I do my best to give my best and only offer what I personally am experiencing, so it is never about me telling them how to live their lives, but rather how I am living my own.
If you read my column and find me inspirational, I thank you. I find you motivational because you motivate me to keep coming back, to keep sharing, and you are helping my healing process as I get to work it out by telling you my story.
So, to you I say thanks for being motivational.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.