I remember reading this article last year that said social media can help fight chronic disease.
No kidding, I thought.
As a chronic pain sufferer (and patient advocate), I know well the power of social media.
Pain patients know what it’s like to be alone. Unless you have chronic pain disease, no matter how much people try, they just don’t know what it’s like.
I will say that social media has changed my life. It allows me and others like me who are battling chronic pain to congregate, discuss, advise, sympathize and share information.
I directly administer 75 social media sites – with different topics and disease states – and I participate in hundreds of others. Facebook, LinkedIn, Twitter are among those that I use. Facebook is my preferred site to meet and talk with other people.
I learn and advise about treatment options, insurance issues, tips and tricks that help people to navigate their lives in pain. I share information that I read. I’ll share this column.
Because it helps me when I’m helping others. As a patient advocate and consultant I remember well the reaction I had when the doctor told me I had Complex Regional Pain Syndrome (CRPS);
I said, “What’s that?”
And the trouble was then that not many people could tell me. I began to research it – in books, online, with doctors – and I learned some things.
But what I really needed to do was learn from people like me – patients who suffer from it. What’s it like? What can I do? Will I get better?
By engaging people through social media, I began to get the perspective I couldn’t get from the doctor. I began to understand how to live with it.
And what a difference it has made.
There are 100 million of us who live in chronic pain – many of us suffer from more than one condition. The information we receive from the medical community and industry is often uneven and sometimes even inaccurate.
My own journey included trying PT/OT, exercise, yoga, meditation, meds, gels, creams, steroids, lidocaine infusions, cortisone injections, nerve blocks, a TENS unit, Calmare treatments, and transcranial magnetic stimulation with IV ketamine infusions to name a few. Along the way there were questions about the effect of the treatments, whether insurance would pay for it, other things I could try.
Some of the answers to those questions came from my friends on social media.
Now I want to make sure that you understand I’m not saying the ONLY information you should seek is that which fellow pain patients say. You need a good doctor, even a team a doctors! What I AM saying is that the doctor alone may not be enough.
As any pain patient will tell you, no one treatment ever works for everyone. There is no one size fits all solution. Pain behaves (or misbehaves) and responds differently.
It’s important to know that and to share that, which is what I do on social media. I share the information in a raw, unvarnished way. Telling the truth is my mantra. The truth isn’t always pretty, or easy to share.
In my social media groups, there are no rules except that I won’t tolerate drama or bulls—t. So, as I think about it, I guess there are two rules – no drama and no bulls—t.
You know that we pain patients hate the night. As a rule we have a hard time sleeping. It’s hardest at that time. Our loved ones – if we are lucky enough to have them (I am) – are sleeping which makes our inability to sleep frustrating. Actually, frustrating doesn’t even describe it. How can one put it into words? When you are rocking back and forth on the edge of your bed in pain wondering how you will survive until morning – that exceeds frustrating. That is when I turned to social media for support.
That’s a time when I’ll get up and get on social media and talk to my friends there. Not only are they available to you (because chances are they are having a hard time sleeping too), but they understand.
Building online communities for pain patients is palliative.
If you aren’t using social media and online forums, you should.
If you are, let us know how they work for you!
And if you’d like, find me online!
You are never alone-we are all in this together!
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