REQUEST: DO NOT READ THIS IF YOU ARE NOT WILLING TO READ IT UNTIL THE END.
Who defines stigma?
“Why does your sister have a tube in her neck?”
I was asked this many times as a child.
When I was 5, my sister finally came home after living in the hospital for the first three years of her life, and I finally had a little sister that people could meet! At 5, I only looked at my little sister as my sister, and I was used to her machinery and tubes because I visited her every Sunday at the hospital from ages 3-5. I certainly didn’t see the differences, but neighbors did. Friends that came for playdates did. When we had outings, schlepping all the equipment and a nurse with us, strangers did.
I was not trying to break the stigma, nor did I have that language to articulate it in that framework. I would simply fight for my sister by shouting out (maybe not literally) at anyone and everyone: what are you staring at? People didn’t have tact, and many still don’t, but I was always on a mission telling people that humans come in all different shapes, sizes, colors, and flavors of religions/traditions. I never ever looked at anyone with any kind of handicap differently from any other person. If I wasn’t going to stare at a perfectly normal-looking person, I certainly wasn’t going to stare at someone with a physical handicap.
Fast forward. Recently, breaking stigmas has been a big topic online. I have witnessed over and over people “coming out” with their truths, maybe even their deep dark secrets, stating them online with hashtags like #fightstigma or #nomorestigma. I guess where I struggle is: I don’t even understand fully what we’re fighting against. Stating you have mental health issues is breaking a stigma? Ok, I never thought anyone with mental health issues was different, weird, or needed to feel shame, to begin with. Just like I didn’t think telling people not to stare at my special needs sister was fighting against stigma either.
Stating my truth is fighting stigma?
I’ve been dealing with an OCD disorder called trichotillomania (go ahead, I will give you a minute to look it up), anxiety, and depression my whole life practically and I proudly take medication to help me function and be the best me. And I know 100’s and 100’s of women who are also challenged by these “plagues”. I never hid this from family and friends, but I also never painted it on my door, made a flag and hung it on my car window, or stapled it to my shirt. (I certainly never wrote it in a blog!) Since I didn’t promote it with some huge marketing campaign, does that mean I was hiding something?
Is hanging my laundry outside (or what we call “dirty laundry”) make me someone who is fighting stigmas? Who said everything needs to be said anyway? Some things are private. Oversharing is weird, TMI, and makes people feel uncomfortable.
And Since when is the only way to fight stigma by going all out and telling everyone your truths? But maybe the better question is: why are people hiding truths, then coming out with them for the sake of fighting stigma, when there is NOTHING to be embarrassed about in the first place? I really feel people are creating stigmas (or making them worse) by proclaiming we are fighting against them. Not everything has to be shared, and you don’t need to share in order to fight stigma.
When I got divorced and wrote about it openly, and when I talked about being a single mom, I was not fighting stigmas. I was simply sharing truths, usually not publicly but sometimes I did, and that was all. I wanted people to know they were not alone and that I had amazing resources and experiences that I was willing to share. I never thought about it like, “The world views religious divorced women as different, and now I will fight that stigma with my talking about my truth openly”.
In my first marriage, I was incorrectly diagnosed with a certain (see, I am being vague!) diagnosis that interfered with my life and my marriage. Thank G-d the Doctors got it all wrong and I didn’t have that diagnosis but it was a journey until I figured out I didn’t have it. I might not have had the “problem”, but I did have the journey of walking through those challenges of thinking I did. So I used all the information I had collected and the experiences I had been through to help people who actually did have this problem. And there are so many people that have it! I am open about it with the right audience because I know many people that were helped because of the information and resources I gave them and by sharing my story with them. But I didn’t post it on FB with a hashtag #fightstigma #awarenessforwomen. That would just be TMI and would make people feel uncomfortable. That doesn’t mean I am embarrassed either!
Same with my mental health, same with my trickle-tickle-mania (as my husband calls it!), same with being in a bad marriage, then being divorced and a single mom, same with being the sister of a special needs sibling.
Here is the catch: share with the whole world, just with your therapist, just your family and close friends, or don’t tell anyone! It doesn’t really matter to me. It’s your choice. But if we give so much attention to fighting stigmas, we are just pouring oil on the fire because then we are stating there are stigmas, to begin with! Yes, I know stigmas are a reality in society but I don’t fight stigmas because I choose not to give them attention. Everyone has issues, everyone, and sharing them or not is a personal decision but no one, NO ONE, should ever judge or look down at people for being gay, physically ill, mentally ill, divorced, autistic, or because of their culture, gender, weight, accent, race, color skin or religion. Don’t judge to begin with and then there won’t be a need to fight stigma because there won’t be any! (Important Note: I know we don’t live in a Utopian society and I know people do judge; I’m not out to lunch here about humans and their nature. What I am pointing out is the reality of our world is very sad and if you don’t choose to look at people who are different as a-typical, because every single person is different because we are all human, then stigmas wouldn’t be a hot topic!)
3 important points about sharing
I want to make another really important point. You can choose to share what you want to share if it will only affect you. If you want to fight stigma, NEVER share something if you are hurting someone else along the way!
Recently, an old childhood friend of mine made a big change in his life and he was planning on going viral with the news. He sent me something he wanted to share with the world and asked my opinion. I think he had really pure intensions: he thought he was fighting a stigma and stating his truth. But he had it all wrong and I told him so. Why? Because this post would have GREATLY impacted his children and wife and he had no right, in my opinion, to break stigma and tell his story while it would naturally affect his family negatively because ultimately, it was their story too.
Pretend you saw this on FB- and I’m completely making this up.
Elizabeth Parker: “FB world. I want everyone to know that I am bi-sexual and I want to be open about it. We shouldn’t treat people who are bi-sexual differently and no one should be judged for their sexual orientation. I am the same person! #fightstigma. #bisexualawareness #nodifferent”
Elizabeth dear, this post will obviously affect your husband (if he stays married to you after that announcemenet)! How can you think that fighting stigmas is a greater priority than protecting your husband from embarrassment? Ans being bi-sexual isn’t the topic being discussed here- it’s the fact that Elizabeth doesn’t understand it’s not just her story to share, its also her family’s story.
So if you are on a rampage of fighting against a certain stigma, make sure:
#1- your story doesn’t hurt people around you
But also make sure you read point number 2 and 3.
#2- Make sure that you are indeed sharing your own story and not someone else’s (ie: spouse, children, parent etc.).
Another real example. A post went viral recently about a dad who wrote about his daughter being in a psychiatric hospital. My first reaction was: there is no way he would have written this without her consent. I contacted the mother and just as I thought, they spoke about it with their daughter first and she wanted her story to be written about publicly in order to fight the stigma of struggling with mental health issues. If a parent would ever tell their child’s story as their story, in order to fight stigma, I would be really shocked because that is completely inappropriate. It’s not your story to share!
Imagine a parent telling her teen’s story on a FB post:
Dana Smith: “My son is battling depression and is in a hospital ward. I want you, FB world, to know to prove there is no difference between depression and cancer. If he had cancer, G-d forbid, I would share it. So no difference! I want to fight against stigma and people who are fighting depression should know they have nothing to be ashamed about. #fightstigma #mentalhealthwareness”
What is wrong with this post?
This is her son’s story. Not hers! What right does she have to parade against hiding mental illness from the perspective of her son’s experience?
Here is the last point to ask yourself before you share a fighting stigma statement, and this is a sensitive point.
#3- Just ask yourself: why am I sharing this?
Is it for the sake and cause of fighting stigmas? (Lishma, as we say in Hebrew)
Or (and these are hard questions to ask yourself) are you looking for an excuse for people to know what you are going through? “I am so sorry Fiona for what you are going through! Here for you! xoxo”
Or maybe because you want help and can’t ask for it?
David: “I can’t get a job because I have dyslexia! #fightstigma #dislexiaawarness”
…. and BOOM, 100 comments of people offering you ways to help to help you and fight against that stigma.
Or maybe you are just trying to get attention and/or acclamation?
Stacy: “I was raped in 11th grade… I am sharing my story so everyone knows there is nothing to be ashamed about. #fightstigma #rapeawareness.” And then within seconds: “Wow, Stacy thank you for sharing! You are amazing! Standing right behind you. Go you!!!” or “Thank you Stacy for sharing. You are a real trailblazer against fighting for sexual abuse awareness!”
Sam: “I want to share that I tried committing suicide last year and I am getting the help I need. #fightstigma #suicideawarness…”. And BAZAM, 200 comments of people now knowing what you are going through under the pseudonym of “fighting stigma”. “We love you Sam!”
LET ME MAKE SOMETHING VERY CLEAR: I am not judging anyone who does post for any of these reasons. Sometimes they save people’s lives and help people process, cope and recover. Sometimes, if not always, these posts are 100% the right thing to do. I am not saying there is anything wrong with any of these reasons for posting, getting support is VERY important! What I am saying is if you do post a truth about your life, at least know what the root is of the post and where it is stemming from inside you. The springboard of a post could be from so many places and one should know the real reason he or she is sharing, even if they won’t admit it out loud or to others.
I just fought stigmas while writing this. But that was not my point nor what I was trying to do. I don’t see people with differences or needing help as people with issues who need to fight for their rights and fight against anyone who sees them otherwise.
But this is all a catch-22, I suppose.
Share and fight stigma.
Don’t share because it’s none of anyone’s damn business.
Share or don’t share- do what’s good for you. Just think before you press submit.
If you are seeing this right now, you know that I at least did! 🙂