Why I Won't Let Cyberbullies Keep Me From Posting About My Illness


Last night I read a post on Instagram about people being bullied because they have a chronic illness and share it on social media. It claims some of us are attention-seekers, or glorify our illness to gain sympathy from others. It sort of hit home with me because I think when you have a chronic illness you battle those accusations, whether it’s from a friend, a family member or anyone who just don’t understand what you are going through. You worry people think you have way “too many” medical problems, or that you sound like a hypochondriac when you tell them the battle you face daily.

 

Surprisingly, not everyone is so supportive. I know with lupus it’s called the “Great Imitator” for a reason. I went 20+ years not saying much, not seeking medical attention, hiding the pain and focusing on my career and my family, basically not wanting to admit I was sick. I would always say “I’m fine” and battle through the pain, although I knew something was very wrong.

I could only pretend for so long until I became very ill back in 2013. I noticed when I finally had the courage to tell people or family members I have lupus, I would get the eye roll, or “What is that?,” “Well, at least it’s not cancer,” or worse, “Oh, I know someone who died from that!” These comments left me speechless, and I was concerned about the lack of knowledge of this disease. So I decided after much thought to start documenting mine and my daughter’s journeys for anyone to see, in the hopes of spreading awareness and maybe helping others who are battling the same autoimmune diseases as us.

So where do you draw the line in oversharing on social media? I want to help others like myself who are struggling to not feel alone in their journey. I know it was comforting for me to connect with others who have CNS/SLE lupus and share our symptoms because it can make you feel isolated and at times wonder if others are experiencing the same. I try to be honest and also positive at the same time about having a chronic illness.

After reading about the bully website that is out targeting the chronically ill and other spoonies, I thought about deleting my Instagram account for privacy reasons, especially because of my daughter. I don’t want her to be a target since she is battling enough at such a young age, with Graves’ disease, mixed connective tissue disease (MCTD)/scleroderma, celiac disease and being a thyroid cancer survivor.

At the same time, I also thought about all the wonderful feedback, messages, support and friends I have made because of the social media account, and also how much I’ve learned from others and what they are going through. It was not worth deleting my account over or even thinking about. No matter what anyone does on social media, whether it’s advocating for an illness or sharing photos of your life, there is always going to be someone who will be negative and scrutinize you, especially when you put your life out there.

My goal is to touch others in some way and spread awareness, even if it’s just one person at a time. The bullies will always be there, judging, being negative, no matter what you do. It’s up to you if you will fall into their web and let them take you down. Don’t worry if you think you may overshare your experience, because you never know how you may touch a stranger’s life or become someone’s inspiration. If the person doesn’t like what you post or write about, then why are they reading it? They have an option to scroll past.

Don’t let the bullies define who you are. Anyone who targets and preys on the chronically ill is weak. We are the opposite of that – we are strong warriors. You cannot make everyone happy. Let the positive overrule the negative and do what’s in your heart. I know I will.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via DragonImages.

TOPICS
JOIN THE CONVERSATION

Related to Lupus

selena gomez instagram on birthday, sitting on table with cake surrounded by balloons

Selena Gomez’s Birthday Wish Is Something You Might Have Asked For If You Have a Chronic Illness

Selena Gomez turned 25 on Saturday, and she asked her fans for a birthday gift you may have asked for, too, if you have a chronic illness. In a tweet posted on her birthday, Gomez invited fans to donate to a nonprofit organization dedicated to researching her chronic illness — the Lupus Research Alliance. Thank you [...]
black and white photo of a woman in footie pajamas walking with two canes

The Big Questions You Face After a Chronic Illness Diagnosis

I was 22 (and a half) years old when I was diagnosed with lupus SLE and fibromyalgia. I was running eight to 10 kilometers a day and at Ryerson University full-time studying Psychology. I ran a charity I had founded called Young Ones, which provides free mental health services to youth in financial need struggling with addictions [...]

When My Chronic Illnesses Gave Me Brain Fog as a 'Party Favor'

I am capable, I can do this.  Repeat as necessary. I am capable… what was that again? Brain fog… we meet again. It’s not “getting older,” it’s not “forgetting a few things.” It doesn’t “happen to us all.” There is a special kind of hell in not being able to find the right word and [...]
college student studying in the library

6 Tips for Being a College Student With Lupus

I feel really lucky that four months after my diagnosis I was able to begin my Masters degree in a foreign country – not everyone gets that pleasure. Often lupus forces people to quit school or university, with hopes of maybe returning when things are a little better. I, however, really didn’t want to put [...]