Be Your Own Advocate

RubyAlwaysA Note From Ruby:  This post was written by Always and originally published 22 September 2011.  She has given me leave to post it again, now that our family (authors and readers both) has grown in size.  I think it’s a wonderful piece that absolutely everyone can learn from.

The 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.

© Always and A Canvas Of The Minds 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Always and A Canvas Of The Minds with appropriate and specific direction to the original content.

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15 thoughts on “Be Your Own Advocate

  1. Excellent post, and I wish I’d read it four years ago, when I was naive and automatically trusted my son’s doctors. He was put on too many (of the wrong) meds for his OCD, with disastrous results. That is one of the reasons I became an advocate for OCD awareness, to let others know exactly what you wrote………thank you!

    • This is why I wanted to re-post it, and probably will do so periodically in the future. The majority of people are thrust blindly into a completely foreign world, and they have no reason to second guess their doctors. I mean, most spend their lives visiting their doctors for straightforward reasons: You have strep, you get a throat culture and an antibiotic. Easy enough.

      With psych meds there is just so much more. So many more drugs, so many more interactions, so many more side effects, so many more variables and unknowns. Even really excellent doctors can’t be expected to know all of the intricacies. There are now much better resources they can use (my primary pulls out his phone at every appointment to check his super-fancy doctor app for every single medication I take, no matter if he prescribed it or another doc did), but many doctors don’t utilize them, and even these are not fail safe.

      I am so sorry that your son and your whole family had to live through that. But it’s wonderful that you are speaking out and educating others, so that they may be spared such an ordeal.

  2. Ruby, I just want to thank you for reposting this article and yes, continue to repost.

    I got myself tangled in a web like OCDtalk, for roughly the same reasons. OCD was killing me, then the drugs stepped it and nearly finished me off. Why? Because I was handed them without a word, and they were treated and given as if they were like candy. No one, and I mean no one cautioned me about the dangers of popping that first pill. No one said once started you will live through a virtual hell to get off of them. I could say more, but I will resist.

    Thank you.

    • laurabee, I can only guess the types of things you were given. Last year, I was taking Valium three times a day to help control mania. Now this is not something psychiatrists prescribe for this purpose, and my doctor wasn’t thrilled about it, but we had run through everything else and, well, it was working.

      But we both knew I couldn’t take it forever. The withdrawal from it, even tapering off very slowly, was, as you say, hell. The difference in my case, though, was that I knew that it would be awful to come off of when I started taking it, from my own research and from discussions with my doctor. I made my my decision that the benefit outweighed the cost, and because I was an active partner, I still feel it was the right one for me.

      I am incredibly sorry you went through such an awful experience. I hope that you are feeling more in control of things now.

  3. Thank you for re-posting this. I found the information in it to be very useful. I do want to note that Neurontin has been proven to be completely ineffective as a mood stabilizer and there have been class action lawsuits as a result.

    I think people don’t realize the role they play in their own treatment of the disorders. I think that educating yourself is VITAL, but I also think having the right doctors on your team is important too. I had a doctor who did not want to discuss my concerns about my psych medications and their side effects. I stopped seeing her as a result.

    Thanks again for sharing!

    • I’m glad you found value in this. :)

      It’s funny, because of all people, I know what a bust gabapentin was, as far as failing the clinicals, then being touted as the wonder drug for pretty much everything that ails you. But there are consistently strong anecdotal cases where it works, and works wonders. I happen to be one of those. It has done wonderful things to help balance my moods, as well as reduce the frequency of migraines I endure (not that I’m recommending it as a first, or even second line treatment for others, it was about the fiftieth line for me).

      I am so glad you appreciate the value of education. And I agree with you about doctors, and would have made the same choice you did had any of mine not been willing to address my concerns. If a doctor is not at least willing to sit with you and discuss your medications, that is one of the biggest red flags there is, to me.

      • I am glad it worked for you. Neurontin did nothing for me. In fact, I rapid cycled while on it, but, as you and I both know everyone is different. Neurontin does help with anxiety. They were going to prescribe it to me in the hospital and my sister is on it for that.

        You are 100% right. The doctor refusing to discuss side effects with me was a huge red flag. I had another doctor who told me I could never have a baby because of my bipolar disorder at a time where I wasn’t trying to get pregnant. Doctors can just anger me at times.

        • Oh, hon, that is absolutely horrible. I have been upset and left doctors I had for years because of ignorant comments, but nothing as horrid as that. (((HUGS)))

  4. I guess it’s also important to maintain some sense of the level of risk involved too. Side effects can be really rotten, but they don’t affect everyone. The Lamictal Rash, for example, sounds really horrible and is a genuine risk, but affects so few people that most of us needn’t worry at all – just be aware of the possibility and symptoms to watch out for. Instead, every single person who goes on Lamictal freaks out over this side effect which is incredibly unlikely to affect them, and some people refuse it even though the odds are very high that it will help instead of hurting.

    My last psych’s office handed me Strattera and when I asked about side effects, they said “the same you might have gotten from stimulants.” I’ve never had side effects from stimulants. When I did my research, I found that the side effects are not at all the same for these two drugs – they are in different classes in terms of how they work and therefore the side effects are different. And wouldn’t you know it, I got at least 10 side effects from Strattera that I had never had from a medication before, including several “rare” side effects.

    So it’s not just docs refusing to discuss side effects, but also brushing them off with something like “same as you might have had before” and not reviewing important potential interactions (e.g. with Vitamin C, for example…) with you for each medication.

    • See, you already are a wonderful example of “Be[ing] Your Own Advocate”, DeeDee. Understanding that some drugs come with side effects that could be scary but are rare (and furthermore, Stevens-Johnson and toxic epidermal necrolysis – the Lamictal stuff – are easy to identify and reversible), not being satisfied with half-assed (pardon me) responses from those prescribing, going and researching on your own and educating yourself, you’ve got this whole mindset down. And that is going to not only help you to actively participate in your treatment – which I know that you do – but ultimately it does something very important that wasn’t discussed above. It empowers you. When you feel like you have the final word in what is prescribed to you, it creates a much healthier mindset for staying well.

  5. This puts me in mind about another aspect of advocacy, perhaps a topic for my next Canvas post, lol. Besides being knowledgeable about drugs and such, you also have to be knowledgeable about conditions, especially when I diagnosis hasn’t yet been determined. You have to assert what you want from the pdoc or therapist; otherwise, it’s likely they won’t know to give it. This is very difficult for anyone with social anxiety disorder (or any other diagnosis related to mental health, for that matter) to do. I have learned to do this the hard way over the past couple of years.

    • You make a really excellent point. Psychiatrists/psychologists/therapists are not mind readers. I guess I think about this one less, because I have always been very assertive. About everything. But I am the extreme exception, not the rule. I went into my first psychiatric appointment, years ago, and told my shrink that I was bipolar. Okay, actually, since i thought we would ultimately have a better working relationship if he “made” the diagnosis, I told him everything he needed to know to diagnose me as bipolar.

      But, beyond that, once my doctors have gotten to know me and understand that I’m intelligent, resourceful, I research things thoroughly, and I’m not a hypochondriac, it has pretty much been me telling them. Which is highly unusual, even for someone without social anxiety disorder. I can’t even imagine how difficult it must be for you. :(

      I think that if you really take the time to do thorough and extensive research on the conditions you may be dealing with, it might make it slightly easier to bring things up with your doctor. You’re kind of in an extra-tough spot, though. Most consumers have a friend or family member they have been able to confide in, or even who have simply witnessed symptoms and manifestations, who can kind of “go to bat” for you when you are unable. You don’t seem to have anyone like that in your life.

      We’ll figure something out for you yet though, Angel!

      • My therapist told me that about the “at bat” sort of thing. However, I don’t think I can be the only one like that. There’s just something about me that makes me secretive . . . and even if people witness the way I behave, they don’t know what it’s like to be me, not really. I hold back. The way people might describe my behavior could sound like the opposite of what’s really going on. Surely others must have a problem in being able to confide in people? Others with social anxiety or people who distrust others?

        • I don’t think your mistrust of people is at all unusual. For example, I said I went in and told my first psychiatrist everything he needed to know to diagnose me as bipolar. However, there was a shit ton (pardon) of stuff I didn’t tell him.

          I was talking to my PCP about my shrink, after the latter had been treating me for nearly five years. We were discussing trust, and specifically the fact that I still didn’t fully trust my psychiatrist. My primary asked me, “Do you trust anyone completely?”

          To which my knee-jerk response was, “No.”

          Now, honestly I could modify that, as there are a few people I trust implicitly. Just not one person with everything.

          To further illustrate my point, a few months back my PCP and I were talking about my psychiatric symptoms. Now keep in mind that this man has known me more than half of my life, so he knows me well. He said to me, “But you’ve never had hallucinations.”

          To which I burst out laughing and said, “Oh, yes, I have.”

          He kind of shrugged his shoulders as if to say, ‘Alright then.’

          I know this doesn’t really help you with your ability to disclose, but I guess my point it that if the doctor with whom I have been more honest for longer than any other does not find it remotely surprising that I could have gone all of these years without mentioning my hallucinations to him (and he was not for a moment questioning the reality of them), you are certainly not alone in being withholding in your therapeutic relationships. ;)

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