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Facebook Says Epilepsy May Offend Users

If you have ever posted anything on Facebook and tried to reach a wide audience, you know you just have to bite the bullet and pay for advertising. But apparently Epilepsy is now potentially offensive to the Facebook community. This makes raising epilepsy awareness via the platform a bit of a challenge.

Facebook has some rules and regulations advertisers need to follow. These are fair enough in most cases. For example, there can only be a certain amount of text in an image. Generally, I have found these rules inconvenient but not a real problem. But Facebook has finally take the rules and regs too far.

 

It started last Spring…

Last spring, I put out a call for more caregiver stories through a post on Facebook. When I tried to boost the post I was surprised to find the ad was rejected. A “boosted post” on Facebook has a wider reach that an unboosted post. I wanted to be sure plenty of caregivers knew about the opportunity to submit their story.

Here is the post I had hoped to boost. It seemed innocent enough to me.

Facebook’s thoughts on Epilepsy

I know when Facebook rejects an ad you can appeal the decision. So, I went ahead and submitted an appeal to Facebook. When I have done this in the past it has resulted in a prompt and positive response. But this time I received the following note:

Hi Jessica,Thanks for writing in.

Your ad wasn’t approved because the body/title text calls out to specific user attributes (ex: race, religion, age, sexual orientation, gender, disability or medical condition, financial status, membership in a trade union, criminal record, ethnicity, name). Such ads may offend the users and lead to high negative sentiment.

Ads should not single out individuals or degrade people. We don’t accept language like “Are you fat?”, “Are you in debt?” and the like. Instead, text must present realistic and accurate information in a neutral or positive way and should not have any direct attribution to people.

ex: Share your epilepsy experience

The language of the ad should be focused on the product and not users. You can recreate your post with these guidelines in mind and try to boost it again. If you used ad creation, you can edit it in your Ads Manager.

To learn more about our language policies please visit our Help Center.

Was this helpful? Let us know Have a great day.

Thanks, Sophie Facebook Ads Team >On Tue Apr 25, 2017 16:59:20, Jessica Keenan Smith wrote: >Ad ID : 6068700010266 >Additional Information : This ad follows Facebook policies. I don’t understand why it was not approved. >

My Response

Sophie,

My entire site is a resource to those living with epilepsy. It is also
written by and founded by people living with epilepsy.

Share your epilepsy experience is not akin to “Are you fat?” or “Are you in
debt?”. Epilepsy is a disease state that affects more than 65 million
people world wide.

I appreciate your feedback. I will post an article on my site including
your response. I look forward to hearing the community’s response.

Best,
Jessica

Following my note Facebook accepted my money and boosted the post. Ever since I have been careful to not include the word epilepsy in my posts.

 

The Final Straw

But this weekend when I put out a call for Ketogenic Diet recipes, Facebook denied all the posts I tried to boost. See the image below:

 

 

What’s Your Take?

I didn’t realize that writing about a disease state would degrade people. I would love to know your thoughts on the situation. Please comment below!

Jessica K. Smith
Follow Jessica K. Smith:

Founder

Founder and CEO Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.

40 Responses

  1. Epilepsy Simcoe County
    |

    and we wonder why it is so difficult to raise awareness and get rid of stigmas surrounding e——y.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Right?! Seriously.
      I’ve been at this for YEARS and it feels like I am peeling back layers of an onion. But every bit helps so please share with friends and followers!
      Thanks,
      Jessica

  2. Stephanie
    |

    This is disgusting. You are doing a good thing by raising awareness for those living with Epilepsy. Oh, it’s OK for Facebook to boost pornography posts, but when it comes to something serious, it may ‘offend’ someone. I’ve been epileptic for fifteen years, and I’m happy to support others. This is an outage, and Facebook needs a good kick to see that Epilepsy awareness is just as important as cancer awareness.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Stephanie,
      I welcome the outrage but maybe lets avoid the need for any kicking. Our words should have enough impact for now. Thanks for getting all riled up on everyone’s behalf 🙂 I know I appreciate it.
      Jessica

  3. MM
    |

    Shame on Facebook. Those with seizure disorders desperately need the resources you are offering. The general public is also interested because almost everyone knows someone with epilepsy. I can’t think of one reason why anyone would be offended by your ads. Your posts are integral to the epilepsy community as they connect us with each other to share our stories and improve our well-being. There is such a shortage of resources for epilepsy patients!
    I understand why Facebook would have such a policy but there has to be some balance – some common sense. Obviously they lack the awareness too. Disappointing and hurtful.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Thank you for your kind and supportive words. I appreciate you taking the time to share your thoughts when everyone is so busy these days!
      Jessica

  4. Desiree
    |

    This is very sad. Have you appealed these latest ads? It looks like you’re going to have to fight for every inch you get because of the word, “epilepsy.”

    We have such a long way to go in Epilepsy Awareness. The stigma and the fear is still there. And mostly there only with Epilepsy. It’s really crazy. And shows you that policies are as much about politics and power as they are about principles. And that the strategy of the Epilepsy Foundation isn’t working and needs rethought out and reworked for a new generation. So many other conditions have had success in helping society understand and in promoting awareness and acceptance. Why not us?

    Check out what happened to us with a local organization staffed with disability inclusion activists.
    https://brainblipjourney.blogspot.com/2017/04/excluded-by-inclusion-activists-cost-of.html

    • Jessica K. Smith
      Jessica K. Smith
      |

      Desiree,
      I’m so sorry for your experience. I agree a different strategy needs to be put in place in order to make a difference. I hope stories like yours and and mine reach more like minded people so we can begin to shake some trees!
      Best,
      Jessica

  5. Jenn
    |

    I think this ad would be great… more awareness and support needs to go out for epileptics. Facebook isn’t looking into seeing why this ad would HELP others. As an epileptic, I’d love seeing an ad like that and I dont know one single person that would feel “singled out” by this kind of ad. We need more awareness and support for epilepsy… I don’t have convulsive seizures and I had to educate many people on what kind of seizures I have so they know what to do. Ads like this helps educate the public and provide support to epileptics!

  6. Matt
    |

    I love the ad. I’ve had to deal with occasional stigma since I was a kid. I didn’t have any friends through the second half of elementary school because one of the other kids saw me have a seizure and after that they all thought I was contagious. One time I woke up on the floor of the shower to see my blood flowing down the drain because my face hit the faucet when I fell. I don’t need Facebook deciding how to “protect” me by censoring somebody that’s clearly attempting to help.

  7. Connie Applegate
    |

    Considering Epilepsy isn’t fake news. I don’t understand the banning of your posts.
    My sons lived with Epilepsy for over 18 years.
    Reading other people’s experiences around the World helps ease the inside of our pains that we aren’t alone.
    If there is a possibility of something new that may not be aware of can be brought to our Neurological Doctors .
    Ive never heard of implants or such things until reading posts of others.
    My sons Epilepsy is a rare case per his doctors statement. It has to deal with his inner ear that sets his epilepsy off usually by an ear infection or simple burst of air inside the ear.
    We as an Epilepsy Community need the informations that we may not be aware of.
    Restricting and Regulating FB post towards Health Awareness is going over board.

  8. DENNIS M. O'LEARY JR.
    |

    As a husband/ dad who has fought epilepsy for nearly 45 years this 1st time I’ve ever been told epilepsy offensive. Maybe we need to advocate as much for epilepsy as all cancers.

    • Jessica K. Smith
      Jessica K. Smith
      |

      We just need to continue to advocate for each other like you say. Thanks for your comment!!
      Jessica

  9. Dillon S
    |

    This is outrageous. You provide education and interaction on this blog and it’s unfortunate that many people in society can be offended by something they know little about.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Dillon,
      I’m so glad you have found the site useful. It is unfortunate but we just need to keep supporting one another!
      Best,
      Jessica

  10. Andrew Purvis
    |

    Facebook is, sadly, trying to use a hammer to change a flourescent tube. If they can verify celebrities’ pages, they should be able to verify organizations’ pages. That would allow their system to clear relevant posts.

    I am all for organizing a campaign involving mass simultaneous posts by those of us who have epilepsy: just overload them with the positive.

  11. Kim Caufield
    |

    I am most certainly NOT offended by any of the posts related to epilepsy, the ketogenic diet, or any form of treatment that may be discussed. I have a son who has been battling this disease for over 15 years now so I find it helpful and therapeutic to read information/stories shared through you. I thank you for doing a wonderful job and keeping our epilepsy warrior community connected!

  12. Lanette bernhartd
    |

    This is my 5th year with epilepsyat the age of 46. I had a postictal psychosis in may where I shot myself in the chest. Then I had to cancel my appt with my primary due to the hurricane Irma and now he won’t see me again. My husband works out of town a lot and so I’m alone a lot and yesterday I had a seizure was talking on the phone one min woke up on the floor 3 hours later broke 3 toes and a bone in my foot huge knot on my head and bruises all over because I haven’t found a dr yet and I have no medication.ots humilitating but I’m glad I woke up. I think if I were to come to sudep may have been Breyer for everyone else because I wouldn’t be a burden any more..

    • Jessica K. Smith
      Jessica K. Smith
      |

      Lanette,

      I am not a medical doctor and cannot make any recommendations or referrals. This response is not medical advice and cannot be considered as such. But as a fellow person with epilepsy I heard the need for a little support. So I have looked around on the internet to see what doctors might be in your area. I am not sure they take your insurance (or even if you have insurance). But in the spirit of support, I wanted you to have more options than simply waiting for SUDEP to take over. Below you will find two links to neurologists that appear to be in your area:

      https://spineandneurocare.com/physicians/profile/Joseph-T-Cheatle-MD

      https://www.mcleodhealth.org/physician/michael-mccaffrey/

      Know your epilepsy friends are thinking of you.
      Jessica

  13. David
    |

    Jessica,
    I have delt with Epilepsy for 36 years, all thanks to half of my 4th Grade class falling on top of me, making the Left Side of my Head hit a Church floor, and knocking me unconscious. Over the years, I’ve had to deal with a number of people who were afraid of Epilepsy, just because they didn’t know much about it, even though it’s the second most common health disorder in this country, and the most common neurological disorder world wide.
    I find it to be offensive, and insulting to everyone who has to deal with Epilepsy, for Facebook to block your website, just because it mentions the Ketogenic Diet! That is simply another medical way to try and get a person’s seizures under control. In fact, there are many anticonvulsive medications that have the side effect of raising a person’s weight.
    Society is just still too timid to fully discuss Epilepsy. In fact, when I had a seizure in my 6th Grade Math class, the teacher didn’t make sure I was safe, and also calm down the rest of the class. SHE RAN OUT OF THE ROOM! I could write a long list of events that happened, all because of the fear of Epilepsy. The one thing that’s helped me in times like that, has been the thought of all of the famous people, who had Epilepsy. Three of them are:
    Sir Isaac Newton
    President James Madison
    Thomas Edison
    Facebook, and Society just needs to grow up, and over come their Childish Fears of Epilepsy.

    • Jessica K. Smith
      Jessica K. Smith
      |

      In all fairness David, Facebook didn’t block my website. They just didn’t allow me to purchase advertising on the topic of epilepsy. OF course as a private company that is their choice. Similarly, as a consumer it is my choice to let the epilepsy community know about how they handled it. 🙂 Thanks for your comment and for your support!!!

      Best,
      Jessica

  14. Mishka Brownley
    |

    I manage facebook pages for a number of small businesses. I believe the issue with your first ad isn’t that facebook finds it offensive, but it’s that you’re “singling out individuals” by using the phrase “Are you….?” It has been a source of frustration for me many times in the past and I have finally figured out to not include that in ads.

    It helps to make the ad copy about your services. For example, you could reword it to say something along the lines of “We want to hi-light the people behind the scenes, caring for others living with epilepsy. We are looking for personal accounts from care givers, submissions can be made using the link below. Just one story cold change a life!”

    As I can’t see the copy from the posts that you tried to boost, I can’t tell what the issue is there. I hope this helps though.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Mishka,

      Thank you for your note. The text that is the issue, by that I mean the text that causes the ad to be rejected, is “your epilepsy (story)”. It’s questionable as to whether or not the word “story” is part of the problem. However, I need to include that phrasing in the intro of the page for it to make sense to the reader and for SEO. When I include the link in Facebook the text is automatically picked up so I am a little bit between a rock and a hard place.

      As I mentioned in the article, I tried several workarounds for the past few months, but when I used the link this past weekend ALL my ads were rejected. That made me feel like it was time to speak up about the situation. Thank you again for your reply.
      Jessica

  15. Jack
    |

    Facebook can be sued for violating the disability act. And they will be forced to post it

    • Jessica K. Smith
      Jessica K. Smith
      |

      Jack,
      Thank you for your note. I appreciate your support however because Facebook is a private company and this a question of the purchase of advertising I sincerely doubt they can be sued. They can always be (respectfully) encouraged to modify their policy through consumer requests.
      Best,
      Jessica

  16. Sheri Ferguson
    |

    I am no longer on Facebook, closed my account several years ago. It is actually chilling to me that an organization the size of FB can feed into the stigma attached to Epilepsy. Yes, Epilepsy. I am sorry Jessica that you had to go through the process trying to get ad approval, and I also Thank you as an advocate. I will share with my friends in our community, who hopefully will share on the Facebook network.
    Shame on you, Facebook! I thought better of your team, Mark Zuckerburg.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Sheri,
      Thanks for your continued support.
      Best,
      Jessica

  17. Michael McKenna
    |

    Hi Jessica. Thank you for everything you do for people living with epilepsy, and for raising epilepsy awareness. One Facebook epilepsy ad issue I feel lies within what the public knows about epilepsy, and that may not be much outside of a scene in a movie or TV show showing someone having a seizure (which may be portrayed as the person is having a seizure because of a drug overdose, etc). Now imagine someone at FB working an 8 hour job where they have to review an ad for epilepsy, following FB review guidelines written by a group of people whose knowledge of epilepsy may be that seizures = drug addiction (according to movies they’ve watched). Result? Ad denied! So Jessica, all I can say is I appreciate you and keep doing what you’re doing to raise epilepsy awareness. I have a feeling after your interaction with Sophie she learned a lot about epilepsy she wasn’t aware of. P.S., if you figure out the FB epilepsy ad approval code, send it my way.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Michael,

      I think the main issue is that I referred to ‘your epilepsy’. I felt it was an interaction worth sharing and will continue to work around the confines of the edges to get awareness out. Thanks for your note, I appreciate the support.
      Best,
      Jessica

      • Michael McKenna
        |

        I hope one day we get to talk again 1:1. We meet last year at AES. Again, keep doing what you’re doing!

        • Jessica K. Smith
          Jessica K. Smith
          |

          Mike,

          Thanks for the comment and the positive feedback!
          Jessica

  18. Julie G.
    |

    I work for a major academic medical center in Boston, MA, and I’ve also had the same problem with Facebook when trying to promote posts about cardiovascular disease. I hope we can find a way to communicate to the powers-that-be on Facebook that educating their members about their health is not offensive.

    • Jessica K. Smith
      Jessica K. Smith
      |

      Julie,
      Thanks for your comment! This is so important to know. It seems using the phrase “your epilepsy” or “your heart disease” as the case may be makes Facebook nervous. Our best bet is to continue to raise awareness on the platform but avoid that phrase.
      Thanks so much!
      Jessica

  19. Marcia F.
    |

    That is SO frustrating and just ridiculous!!! I know FB probably runs these things through automated reviews up to a certain point but I’m just baffled about what, exactly, the negative triggers in your posts might even be. I hope you can find a resolution with FB so this doesn’t keep happening!!!

    • Jessica K. Smith
      Jessica K. Smith
      |

      It looks like any time I use the phrase “your epilepsy” it gets booted. I will just have to be more careful.
      Thanks for your comment!!
      Jessica

  20. Karen Simon
    |

    This is absurd! We are spreading Epilepsy Awareness, and sharing experience, strength and hope in a very difficult life journey. Stop discriminating against disabled people…they are the most vulnerable and need to be looked after, not banned and shunned! Shame in you Facebook.

  21. Elizabeth Meehan
    |

    Hi Jessica,
    I think the type of posts you gave examples from are extremely helpful for persons living with epilepsy, and also for those who do not understand the challenges it creates for persons living with epilepsy and their families. I don’t see how your posts differ significantly from posts directed to help persons living with cancer. They are positive, helpful and relatable. I hope FB will take another look at this. Anything will offend someone, but consideration of the clear intent of the posting is important, and yours are both helpful and supportive.

  22. Mary Lou
    |

    My first thought, besides, “You’ve GOT to be KIDDING me!” was that the ones who would be offended are those living with Epilepsy and their families. And, of course, those who lost loved ones (up to 65,000 each year to epilepsy). How on EARTH does Facebook have the gall to try to continue the stigma of seizures and epilepsy. So sad. Sharing post, and writing #EPILEPSY #EpilepsyIsNotAnOffensiveWord on all posts regarding Awareness and Epilepsy.