I received two emails lately that have made me a little worried.
You all know how much I love, and live for, giving advice. Most of it is unsolicited on facebook comments or in private instant messages. I always try to be informative and clear in my suggestions. Also, I hope you all know that I always want you to double check what I've said with doctor's, nutritionists, dietitians, RA's, and Neuros.
A person not in any of these fields has to give advice carefully and thoroughly and always.. ALWAYS make sure to say something like...ask your doctor first or...check with a pharmacist about the side effects to your drugs, and so on.
Now before any of you worry about me, My Friends, don't. This isn't a "whoops Gin" moment. Newp...this is about support groups. Once again, the support group striketh!
Bad bad bad advice!
On a few loops and groups I've noticed a trend of "I've had Fibro forever so I know all about it" attitudes that have caused a bit of trouble.
Now I could let Evil Gin out to play and tear into these people, but last time I did that the backlash was harder to fix than if I just let the bad advice go. The comments that came at me was: "She was just trying to be helpful and you attacked her. How can you claim to be positive and be so negative?" People just don't realize the repercussions of bad advice and what it can do to someone. Yet I was the bad guy for pointing out the error.
Ohhhh let me tell you, Friends. It is a good thing Evil Gin was kept at bay by the constraints of the Internet, for if this had been a personal confrontation, Fibro Gin might have been Incarcerated Gin.
The truth is, there is one thing I can't stand, and that is obvious, horrid, HARMFUL advice. We've all given bad advice before I'm sure. Even if it was unintentional and something as simple as misunderstanding what the person was actually asking or meaning.
Hey, it happens.
I personally have butted in on pain rant conversations to try and pep people up and it has not gone well. Ha!
But here's the thing...drawing on your own experiences is fine, but you should say "this is what XYZ does to me and the reaction I had to it, maybe you're experiencing an allergic reaction" if you want to be cautious you should add a "check with your doctor". What ISN'T Okay is pretending that you know everything about a drug, or a supplement, when ALL you have to reference is your personal experience! "That is an allergic reaction. Stop your medications immediately!" That is not okay!
The situation was anti-depressants.
You all know I am not a fan and I do not react well to them but I never, NEVER tell people to stop taking their medication unless they consult their doctor and I usually only suggest that if they are complaining about the side effects. (Meaning my personal preference against them does not influence my advice) I also make it clear that the "quitting process" should be gradual and not abrupt just in case they don't consult their doctor (which is extremely unwise and harmful to the doctor/patient relationship).
This...person...told a Fibro Patient that her anti-depressant was causing the bumps on her legs and to toss her medication now. She then began to list all of the frightening things that could go wrong with this "allergic" reaction and urged the Sufferer to "throw away" her unused meds.
That was about two weeks ago I'm guessing(the email was a little unclear on time frame) as the Sufferer has now come to me after this ...person... claims that throwing away the meds is what her doctor told HER to do so that is why she told this Sufferer to do it. And she can't figure out WHY the sufferer is having breathing problems and heart palps and panic attacks and migraine headaches.
So, as I was saying, the Sufferer comes to me. Her doctor is angry with her, her RA who prescribed the drug is angry with her and is booking appts. 2 months in advance and the Sufferer is in so much pain she can't get out of bed. Not only has her flare-up worsened but she has taken a big step back from her relationship with her doctors, AND she's going through a withdrawal.
Now, my friends, before you think she was silly to listen to this...person...it is important that we keep a few things in mind. New Fibromyalgia patients are more inclined to listen to their peers than doctors. Especially if they have a history or misdiagnosis.
Fibro Fog can also make us a little unclear and irrational, especially if we have strange symptoms. There are also some in the elder crowd that don't understand the Internet as well as the younger crowds and when they get advice from someone claiming to be a "lifetime FMS Sufferer/expert" they might be inclined to listen and follow the "expert" advice.
Factor all of that together and you have one scared woman who thinks her medications are killing her.
Now she is asking me what to do. If she had come to me before I would have given her better, positive advice that wouldn't have sent her into a freak-out session that had her throwing out her meds!
But she didn't. And I'm not a doctor, nor a nurse, and my hands are tied.
I've given her all the home remedies for pain etc. The MSM trick I've found and the whole bit but here I am, frustrated...angry and yet a little hopeful that this woman's disaster might save someone else from listening to bad advice just by me ranting about it.
I can talk about it here because this isn't where she found me. Blogs are a little out of her realm right now. The second incident of bad advice I can't talk much about since the chances are good the victim and the ...person... might be watching. Luckily, that one wasn't as serious.
This post is a little big Rant-a-doodle and I'm sorry for that.
I just really need to stress to all of us the importance of the advice we give. Myself included! It is never good to be complacent and to fall into a pattern that could have us harming someone with our indifference or lack of attention to detail.
Fibro is a vicious syndrome that baffles even the professionals so wrong advice is tooooo easy to give. Knowing this we should all be more careful in what we say...and in what we listen to.
As always, My Friends, I have your best interest in my heart....truly.
I hate the thought of any of you falling victim to bad advice!
Stick with who you trust, even if it isn't me!
All my best,