Online Patient Onions - the Advocate Sounds Off

Are you an onion as an online patient?  Let's find out...

Facebook, Linked in, Twitter, Pinterest, Learnist... all these are social media platforms in which health advocates frequently participate.  As advocates, we are often asked to *friend* someone we have never met before because of our advocacy activities.  We're considered patient *experts* by patients and physicians, and when patients want to talk to other patients who can help them, we're the ones they're looking for.

What is your personal policy on these requests?

Most advocates will do a cursory check to see if the person requesting the add is someone that appears to have something in common with us, or just another spammer.  Provided the person requesting the add seems sincere, most advocates will happily add them in hopes they will bring something useful to the community and the conversation, or that there is something we can help them with.  My policy is that I don't *unfriend* people unless they are spammers.

Most of us are advocates/educators because we've been through the mill ourselves and want to try to help other patients to avoid the pitfalls we have already encountered.  We open ourselves up very personally to people we've never met in hopes that they might find something useful in our stories that will be helpful to them.

However, although we as advocates are members and even sometimes leaders of online communities, that doesn't mean that WE are communities.  Our personal pages on these online platforms are not communities nor are they democracies... they are personal. 

As advocates we spend most of our lives helping others with their questions etc.  But have you ever wondered - where do advocates go when they need support or information?  That's where our own pages can be so really important to us.  It is the one little place we have that we get to express ourselves as ourselves.  It's our little place to open up and be a little crazy or hopeful, weeping or joyful, or just tell our friends about our day or our passions.  It's our safe haven.

I admit I do tend to take it a little too personally when someone asks for an add and then shortly thereafter leaves without an explanation to me, even though it's likely they just didn't find a *friendship* to be a good match, or the information I provided those days didn't match up with what they were looking for. 

The Importance of Tolerance and Respect

On one hand, I would really like to know why someone feels the need to secretly drop me instead of simply remaining *friends* and unsubscribing to me so I don't pop up in their feed five times a day - something I forewarn most new *friends* about.  This is usually the result of not knowing how to use the tools of the platform.  If you don't take the time to get to know someone, how can you hope to well... get to know them?  I appreciate those who take the time to give me some sensitive feedback about why they are unhappy or leaving.  Fortunately some do, often just to let me know they found what they were looking for education/information wise and are moving on.

On the other hand, I am just a human being.  There's nothing special or different about me other than my willingness to share my vast and very personal experience.  This means I also have feelings.

Because I am an advocate and work with an incredibly diverse group of individuals, I try to refrain from things that can cause division between my online pals.  I'm not here to push anything but wellness.  My goal is to discuss ways of coping with chronic illness. 

Politics is avoided in particular, not because I am not politically active ( I put my money where my mouth is and even write and go to Congress and state legislators to be heard each year) but because I respect the views of all my friends and am very sensitive to their passions.  I love raging liberals and some raging conservatives and tea partiers.  I don't care about your political alignments, your sexual orientation, your religion (or lack thereof), socio-economic position or if you've been to jail or drink too much.  We're all people.  We laugh, we cry, we feel pain and we all goof up sometimes.  None of us is perfect.  All are cared and prayed for on my page, and disrespect or fighting is not tolerated.  Tolerance and respect is something very high on my list of priorities and expectations of others.

That said, when it comes to my personal pages/walls etc, it is my right to put there whatever I want within the scope of the site's rules.  My wall is not a democracy. 

It's My Wall

My profile on Facebook is open to others to read and interact with, but it is my wall.  This is my blog.  When others go either place, they need to be ready to accept or dismiss whatever they find there, like it or not.  I am a unique individual (in oh, so many ways!) so it is the rare person who won't someday find something that raises an eyebrow.  All I ask of others there is to please, be constructive and be kind to one another.

Tolerance, Tolerance, Tolerance

This week I was disappointed to have received a nastygram from someone who recently asked me to add them to my Facebook page.  After being there a short time, they removed themselves from my page and sent me a lengthy private message explaining that they didn't like a quote by a famous person that I had *liked* on a relative's wall which had been shared and reshared multiple times all over the internet.  The post related to the Aurora, Colorado shootings and was taken and shared on some great places as well as some unsavory ones.  This quote never appeared on my wall or any personal page, nor will it.  The *like* was a sign of support for someone living in Aurora when the event occurred.  Although I make it a point not only not to disclose any political affiliations or personal feelings on my personal wall, but also do not put anything political on my wall.  However, Jill went on to explain that she was "shocked" at all the political posts I put on my wall.  (Say what?)  As a liberal, she stated she was "offended", although followed that by stating she doesn't judge people by their political affiliations. (???)  She went on further to say,

"I felt like this was my place to come and be with others who are in pain as I am. I have ignored several posts already, but they are making me feel like I do not belong here so I will be leaving."

No hon, this is not your place, it is mine.  My wall.  My profile.  My space.  It's your job to ignore those things you don't like (whatever they might be).  If I had actually created these posts (which I did not) this is what the scroll bar and delete buttons are for, as well as private messages to clear up misunderstandings or miscommunications.  Learn about the platform/tool before you use it.  I feel sad that you are so lonely, but that is likely to be a problem for you so long as you continue to show outward intolerance and disrespect for others and their feelings and personal spaces. 

I have an active prayer chain, maybe that is what she was offended by?  Who knows.

She ended her note by stating,

"I ... hope that you will reconsider others feeling in the future. I know, I am being a typical liberal. Poor people generally are liberals I guess."

She seems here to make the assumption that I am "rich" and a selfish conservative, but worse, that I am callous to the feelings of others.  *OUCH*

Good people don't let disagreements get in the way of good friendships and I try very, very hard, so this was just too much for me. 

I'm not even going to start the stories of growing up poor in Oregon, or living nearly 6 years now in a house that is only half finished on a farm where I had to sell my beloved horses/business because my health forced me to quit working my 3 jobs and made me virtually housebound.  Those who follow me have heard some of them. 

She obviously didn't take the time to get to know me or she would know better than to make these ridiculous insulting assumptions.  Although my family's finances are the business of no one else, I will share that today we live paycheck to paycheck, have no retirement or savings, and I buy necessities like clothes once every year to 18 months.  I am just a normal person trying to make the best of a very bad situation.  The majority of our finances goes to pay for our home and my medical needs.  I work for pay only a couple hours a week.  The rest of my time - around 13 hrs a day- is spent diligently helping people online in a voluntary capacity: 

I volunteer as a medical first responder, answering the radio whenever it calls and I am physically able to respond.  I volunteer as a CERT (Community Emergency Response Team) trainer, coordinator and member.  I volunteer on our local Search and Rescue team.  I volunteer with youth and families on a personal level.  I rescue animals, and people. I go to church and openly pray for everyone who asks.  I am a devoted friend and family member, not only to those related to me by blood, but by love and friendship alone.  What's mine is also yours, if you're my friend.


So, if you see something you don't appreciate, then send me a private message and let me know so I can be more careful next time.  I am always ready and open to learning new things and improving myself.  I am faaar from perfect.  Nastygrams aren't helpful to anyone. 

If this makes me a bad person, then, so be it.  "I yam what I yam".

Onions are a Migraine trigger for me... the sweet edible food, and the sharp distasteful people like this one.


Jill A. T. D. you made my personal Onion list for intolerance and disrespect as well as making poor assumptions followed by quick actions based on those silly assumptions.  I hope you're able to find someone else to help you who meets your lofty expectations. Maybe getting involved in a real community instead of a person's private page would be a good start.  Chronic pain is a terrible thing to have to endure all alone.