Be Your Own Advocate

AlwaysThe title of this post doesn’t refer to joining groups whose purpose is to reduce the stigma of a mental health diagnosis, although that’s certainly a wonderful thing to do.  I’m also not referring to shouting about your mental health diagnoses from the rooftops, although God knows I all but will (I think if I literally did it, they would lock me up and I would further ingrain the stereotypes associated with manic-depression).  I’m talking about educating yourself, really learning about all things related to whatever your particular malady happens to be, psychiatric or even physical.

I know that we blog about mental health here, but I had to add the part about the physical so that I could use my anecdote, which I will now relate to all of you.

I had a friend with a physical issue that had been – well painful doesn’t even begin to describe it, and disabling to him for years, who was all up in arms and worried about me when I was put Neurontin (gabapentin) as a mood stabilizer.  I guess he had been on it before, and was shocked and upset because he discovered after the fact that abrupt withdrawal can cause the development of a seizure disorder.

As much as I really appreciated his concern for me, this was something that I already knew, no research required.  Gabapentin is classed as an anti-convulsant, or anti-epileptic medication.  Any drug that is used to help control seizures will bring with it an increased likelihood of seizures, even a permanent seizure disorder, if discontinued improperly.  You have to taper off very slowly.  Having been on both Depakote (valproic acid, divalproex sodium) and Lamictal (lamotrigine) early on in treatment – both anti-convulsants – I knew the risk (benzos are also notorious for this).

I got into a discussion with him about being knowledgeable about the drugs you are prescribed before you pop the first pill, and not depending on your doctor, although to be absolutely fair, it sounded to me like his doctor just put him on a really high dose and gave him no warning whatsoever of the dangers of improper discontinuation.

Thing is, I know I have a bit of a different perspective on this one straight out of the gate.  When you have manic-depression, you are usually on a combination of meds, not just one, so it logically follows (at least it did for me) that you need to educate yourself about every individual drug.  That way you know which medication is doing what, when side effects and interactions come in and how, and if there are any particular risks to you specifically (drugs which are notorious for weight gain if you have diabetes in your family).

I could rant and rave about this one for several thousand words, but here are my basic rules and suggestions (which shouldn’t scare even a newly diagnosed individual).

Buy a copy of the PDR Guide to Prescription Medications.  This book will be invaluable to you when you are prescribed something new, as it is thorough and reputable, and I think quite easy to read and understand.  It’s way better than just doing a Google search on your medication (although I will address that below).

Buy a medical dictionary.  If you truly want to be safe and educated, you will run into some terms you don’t understand – I don’t care how much schooling you had or how intelligent you are.  Get a good medical dictionary for when you come across something unfamiliar when you are researching.

As to using Google, well, it’s a mixed blessing.  There are some really excellent sites out there (off the top of my head, I like PubMed and Medscape and NIMH), and then there are the ones written and/or sponsored by the drug companies, the sites that have questionable or inaccurate information, and those that have been started by radical vigilantes as a way to share horror stories about every psych med in the world and scare you out of ever pursuing conventional treatment.

The bottom line is this:  There is never any excuse for ignorance when your health, and quite often your life, is at stake.  You need to research the hell out of anything you’re going to be putting in your body before you put the first microgram of it in.  You need to become knowledgeable and advocate for yourself with your doctors.  Good doctors will try their very best to do right by you, but they are not gods, nor are they encyclopedias.  No one has a bigger investment in your health and safety than you.  Make sure to get the best return you can on it.

And thank you to the gentlemen who got me thinking about this one.  I love little more in this world than finding a way to use my experiences in a manner that is (hopefully) beneficial to others.

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3 thoughts on “Be Your Own Advocate

  1. The bottom line is this: There is never any excuse for ignorance when your health, and quite often your life, is at stake.

    Absolutely. I get my hands on every book, article, and diagnostic criteria I can get my hands on. This is also not to mention research on medications and becoming educated about treatment options. This is very, very important. A lot of people are blindly led by doctors who claim to have their best interest at heart. Really, they want the money in their pocket. We should know them all and have our opinions on what may be best for us. I mean, no one really knows our symptoms better than we do.

    I’ve decided that I’m going to be an advocate. After everything I’ve been through lately with this isolation and my husband, I’m sick of it. I’m going to have to start out small. We’ll start with Canvas, and then expand into local support groups to create organizations. Well, I will anyway. I want our voices to be heard. We are not malicious, violent criminals. We are everyday people who live very similar lives as the rest of the population. With the exception that we have an often debilitating condition that requires extra care. I think this should be recognized more. I think that it’s up to us to spread awareness to the norms about mental health concerns.

    I thought it would be really neat if we wrote a book. It may be enough to get it started.

    • I think the fact that you take your health into your own hands and are informed is wonderful, Lulu. I was lucky enough to find a psychiatrist who tried his level best to do right by me, he just didn’t have the time to read every updated study and know every interaction that applied specifically to me for every single med he prescribed. And that wasn’t his fault, per se, there are a whole lot of variables that had to be accounted for. Which is where I came into the picture.

      Best of luck with your advocacy efforts. Just remember that starting small may still be very difficult. Don’t be discouraged. 😉

      • Your words are so important to me! Thank you so much for your blessing. But I want to make sure there is a solid foundation before I start building from there. One step at a time!

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