You Should Tell Your Story

When I decided to make a lupus video for Facebook, I did not expect to get the recognition that I would get. All my life I only heard my mother had lupus, and my aunt passed away from lupus complications. But when I was a child it was not that common. So, I decided to make a video, and overnight it became viral. It was my personal video that I shared with my friends and family and they shared my story. By the morning I had at least 100 messages on Facebook and could not read them all. They were women I could relate to. They were men I could relate to. I did not feel alone.

It is not easy to talk about lupus

Some may think that it's nothing to talk about it, but it is not that easy. Some look at you as if you are seeking attention, so you do not reach out. But most people hope that there is someone they can reach out to. I believe that anyone should consider sharing their story because you do not know if someone has the same story as you that you can relate to. Do not feel like you are alone. There is someone out there who also needs your shoulder. But I learned that there are also pros and cons.

The pros and cons of sharing

The pros are that you are open to a whole new community and support team. The cons are the criticism for your opinion, the push of other beliefs on your own, and more. I received threats sometimes and I also received very mean criticism. You must learn how the good outweighs the bad. I have met some women that have reached out to the community that felt as if they have never gotten a hand back because some people are not into making friends through social media. I chose to focus on the ones that messaged me back since day one on Facebook. Those people are the reasons why I still have any form of social media. But if being uncomfortable weirds you out then I prefer that you don’t do it.

Here are the steps I took to get out there:

  1. Increase your following.
  2. Start a Youtube channel and make journal videos.
  3. Be more open with yourself.
  4. Try to be open-minded to new things.
  5. Learn how to use hashtags.
  6. Make sure your page is not private.
  7. Reach out to others with the same condition as you and relate to each other.
  8. Start your own podcast or YouTube interviews on people with lupus or people who deal with family members with lupus
  9. Do not EVER give up on your dreams
  10. Educate yourself if you do not know and understand your condition to help relate to others with the same condition as you.

People ask me how was I able to stay so focused. Sometimes you must learn how to take a break from the internet. You will have the negatives but mostly the positives outweighing the negatives.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.