How social media changed my life

Written by Silja on 21 September 2009 in epatients - 6 Comments

Jon over at dose of digital just wrote a great post asking Can Social Media Improve Your Health or Change Your Life?

“Of course it can!“ was my immediate thought, followed by a rush of utter frustration: “Why do you still need to explain this to people?“

As I was biking along the foggy path lining the creek to drop of our daughter at child care this morning, it dawned on me that things might not be as clear to others though. I realized, I had a very special story, because social media helped my husband get better. I usually do not share this story. It is part of the past. Yet this morning, I realized how much of a positive driving force it has become in my personal quest to help pharma lower its fear of and engage with patients via social media.

So I suppose it is time for me to share my story…

Eight years ago, I received a phone call from my husband, Francis, who was on his way to work:

“Honey, I cannot breath. I am going to die!” he said.

This is probably the worst call any of us would ever want to receive. Horror pictures of a crunched-up car in an accident was the first image that jumped to my head. “No, I did not have an accident.” he replied “I pulled over. I think I am having a heart attack!” A heart attack at 20-something?!

Well about a good dozen hospital visits and doctor appointments later, we were able to exclude heart attack or any other cardiovascular incident… Yet my husband continued to have these attacks in which he could not breath, not move, not reason.

In the next few weeks, Francis stopped driving, because he was afraid to cause an accident during an attack. He could not go to work or go to the super market without having another attack. As a matter of fact, he was sucked into a spiral of fear preventing him from doing anything at all. 6 weeks after his first mysterious attack, he did not leave the house anymore.

My husband was scared and confused, but most of all he was ashamed. How can you explain to people that you are a 20-some year old, healthy, bright young man with a great career… who is afraid to step out the door?

Since he could not explain what was happening to him, he withdrew further and further from others. He did not want anyone to know about his health issues and all I could do was watch him go down.

“Depression“ his generalist said and prescribed some pills.

“Well of course, he is depressed!“ I screamed in disbelief. “So would you, if you spent your entire day starring at the door too afraid to open it!”

For me this was a typical example of treating the symptoms instead of curing the causes…  I had never been so completely helpless, frustrated, desperate.

Then one evening, I got home from work and my husband opened the door
with a huge smile on his face. First smile I had seen in months.

patient-internet-use

“I know what I have! I found a Canadian forum on the internet, I did the test and I am 10 out of 10 on their scale: I am agoraphobic.”

I had no clue what he was talking about. Neither did I know what agoraphobia was nor what it meant to go on an internet forum. All I knew was that my husband had put a name to the horrible condition ruining his life and mine. And it got better:

“They say, I need to do a cognitive therapy to cure this and they helped me find a therapist close-by.”

(Note: This is in 2003! We were living in Belgium and the forum is in Canada – for those of you, who still believe social media does not work in EU :-) )

Francis started his therapy by making up a list of 100 things, he would like to be able to do and enjoy again without fear. It was a list ranked by level of anxiety which started with walking around the block and ended with driving down to his parents place in the South of France alone for two weeks. He shared his list in the forum and celebrate every single one of his milestones with patients around the world. 6 months later, Francis drove to the south of France. As he scratched out the last item on that list, he made me one of the proudest women on earth.

So how did social media change our life you ask? Social media gave us a diagnosis, a cure and access to treatment. It gave my husband the hope and support he so desperately needed to overcome his phobia.

Would the traditional healthcare system have been able to provide my husband similar things? Maybe. The problem was, he was too ashamed to speak up about his condition. It was not until he found patients like him that he was able to empower himself to face his fears.

I thus 100% agree with Jon: patients will share their data, if in return they get valuable information and these sites need to be patient-focused, not brand-focused in order to achieve this. My husband would have not been comfortable sharing his information on any site run by a pharmaceutical company (and this despite of the fact that his wife was working for one ;-) ).

While the forum my husband consulted provided him with excellent support, there was also a lot of misinformation circulating about treatments. I believe, pharma could add a lot of value to patients by proactively reaching out, educating and providing information to influential online discussion leaders.

By the way, my husband since discovered what had made him sick in the first place: Somehow, he had maneuvered himself away from his passion, creativity and art, into a corporate career in IT that was literally suffocating him. In 2005, Francis decided to go back to his passion and combine his talents in design with his new found love, the internet and social media. His successful blog fran6art and his strong twitter presence, have made my husband one of the leading voices in web design in France.

This year, we started our own company Whydot, helping clients to connect the pieces of the social media puzzle and build genuine relationships with their online community. So you see, social media changed my life in more ways than one ;-)

6 Comments on "How social media changed my life"

  1. Brad at Pharma 21 September 2009 at 17 h 18 min ·

    Awesome.

    Just awesome.

    You’ve touched on what healthcare *can* be… and this was without any “traditional” healthcare being involved. Now, how do we get the FDA and the similar EU agencies to let companies who want to help drive healthcare change into arenas like this without being badly pelted if a patient or healthcare provider begins off label discussions… not *everything* about pharmaceuticals is driven by pharmaceutical companies…

    Of course, a lot of these groups already exist… how can we help make them a bit more robust, stable… insert your own adjective that describes what members of these groups need… We don’t need to be offering solutions to problems that don’t exist, and we don’t have all the answers to problems either.

    Seems like that’s what most corps fear, anyway. They don’t want to wade into a space where the solution is something that they not only don’t offer, but that they don’t understand. We don’t have anything in place that will help our customers find something we don’t provide… now, there’s an opportunity.

  2. Brad at Pharma 21 September 2009 at 17 h 19 min ·

    BTW, #iwork@novartis

  3. ellen hoenig 21 September 2009 at 17 h 54 min ·

    Thank you for sharing your story…social media changes every person’s life in more ways than we realize…i do agree with you how important it is for there to be accurate information that is written in patient friendly terms. I believe its time for Pharma to think more like other industries have ie the car industry where they’ve made it easy to get comparisons of product benefits and risks/safety across product and manufacturer lines…Ellen

  4. Aniko Lecoultre 25 September 2009 at 9 h 17 min ·

    Thank you for sharing this wonderful story with us! I love this double happy ending: healing and re-finding the true path of life.

  5. Craig Delarge 19 October 2014 at 10 h 44 min ·

    Thanks for this. I couldn’t agree more. Thus our passion for use of this medium to similarly impact others.

    While pharma is important, I increasingly wonder if they (we) are the most important necessary practitioners from a broad healthcare perspective. That said, I believe customer service is our greatest opportunity, more than promotion.

    Thanks again.

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