One of the things I’ve noticed in my years of searching for a diagnosis and researching information on the demyelinating disease that I have is how important message boards are. People looking for answers, longing for support, or seeking advice congregate on these forums. For people with disabilities caused by demyelination or living in remote locations, message boards are often the only place they have to turn to when they need information related to their demyelinating disease.
While I tend to be what most would call a lurker, there are several message boards I’ve been known to frequent and post to, especially during the five years I was in “limbo land”. Forums, message boards, and blogs have proven invaluable tools for me to use throughout my years of living with Chronic Inflammatory Demyelinating Polyneuropathy. I am sincerely grateful they exist and consider all those I’ve met in my online travels to be blessings.
For all the good message boards can bring, there is one trend that I’ve noticed that really has me worried. Many members, especially those who have been living with a demyelinating disease for many years, feel the need to give medical advice to those seeking information on the course of their disease or treatment for the demyelination that’s occurring. This is an exceptionally dangerous practice and one that I feel needs to stop.
For starters, unless you’re a doctor and the person seeking information is a patient in your care, giving medical advice is illegal. It’s tantamount to practicing medicine without a license. Needless to say, this is something that is heavily frowned upon by authorities.
It’s also potentially deadly. Most people don’t make a habit of detailing out their entire medical histories, complete list of medications, allergies, diet, and the amount of exercise they do daily when asking for advice on a message board. That means anyone giving medical advice is doing so with only a very limited amount of information. It’s very possible what’s advised could seriously injure or kill a person. If someone follows the medical advice given and winds up hurt because of it, the person who gave the advice could be liable for any and all damages.
For example, Joe goes to a message board and says, “My doctor doesn’t have me pre-medicating before I take IVIg and I keep getting really sick whenever I have to get it. Anyone have any advice on how to lessen the IVIg side effects?”
Jane replies with, “That’s dumb! You really need to pre-medicate. I take x, y, and z whenever I have IVIg and it helps a lot with the side effects. You should do that. It’ll help.”
Joe decides to take Jane’s advice. Before his next round of IVIg treatment, he takes the medication that Jane recommended. Unfortunately, later that night, Joe winds up in the ER because the medication Jane recommended had a life-threatening interaction with other medication he was taking. That possibility for a life-threatening interaction was precisely why Joe’s doctor didn’t have him pre-medicating with x, y, and z.
So, what are we to do if someone looking for answers for the demyelinating disease they have comes to us for help? How best can we support them? Do we ignore their pleas for information and advice? Of course not! We can still support those who need it and give them the information they want. We just need to do it by sharing our experiences instead of giving medical advice.
When we share our experiences we tell others about our journey with demyelination and the various struggles and triumphs we’ve had along the way. We share the information we’ve gained and let others know the treatments that have worked for us. Most of all, we encourage others to continue their search for information and to discuss the discoveries they make along the way with their doctor.
This is how the above situation could look if Jane shared her experiences instead of giving medical advice to Joe:
Joe goes to a message board and says, “My doctor doesn’t have me pre-medicating before I take IVIg and I keep getting really sick whenever I have to get it. Anyone have any advice on how to lessen the IVIg side effects?”
Jane replies with, “I used to get really sick whenever I had IVIg until I started pre-medicating with x, y, and z. They’ve really helped a lot to lessen the IVIg side effects I had. You should talk with your doctor about pre-medicating with them before your next round of treatment.”
Joe speaks with his doctor and discovers why he isn’t being pre-medicated with x, y, and z before receiving IVIg. In talking with his doctor, Joe discovers other alternatives to pre-medicating that might help with the side effects he’d been having. He returns to the message board and says, “Jane, thanks for the information but it turns out I can’t take x, y, and z because it can cause problems with some of the other medication I’m on. My doctor recommended I do a, b, and c beforehand, though. I’ll let you know how it goes after I receive my next round of IVIg. Thanks again!”
Sharing our experiences also encourages people living with demyelinating diseases to be proactive about their health. It encourages them to talk to their doctors about their symptoms and the treatments that are available to them instead of simply waiting for instructions.
Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.
Stumble It!
