It's been a lot of fun. I had the weirdest conversation tonight. A few years ago one of my cousin's signficant other was diagnosed with bipolar. I gave them a lot of information at the time, particularly about how to get a good doctor and about different meds and why certain meds were bad choices for a lot of bipolar patients. So I talked to this person on the phone several times back then, but had never met him. Tonight he was asking me about my illness. I gave the usual comment about being so thankful that my 7 years of hell were over and explained a little about the last year.
I dread this kind of conversation. I'm happy to share my story, and I'm obviously a success story in this whole bipolar thing. However, what I have been through in the last 7 years is not common. I think all bipolar patients have a rough time and I am no way trying to deny that. But what I have been through is not common. I went through over 40 meds before finding the right combination. I went through 7 years (including the time when the bipolar was out of control and I wasn't diagnosed) of pure torture. I went through every medication that was available to me but 2. I had terrible reactions, both allergic and just bad. Things made me worse instead of better. I had to be treated for tremors, hypothyroidism, kidney problems, massive hair loss, and hypertension, all from my meds. I fought tooth and nail to be able to work. I lost nearly all my friends, and at least 1 job.
Yet this person, and he's not the first, insisted that he'd been through the same thing. He has no clue. He's been through a couple of years of treatment and is doing well. He's been on a few meds, not 40-45. He's not had any severe allergies. Sure, he went through a bit of trial and error to get a combo that worked. Most of us do. But that does not mean you have any idea what I survived. Everyone's story is their own, and I respect that he has undoubtedly experienced things I haven't. But it is so very hard for me to be patient when someone thinks they can possibly have any idea what I have experienced. 7 years of some rather serious paranoia. 7 years of hurting people I care about, just because things were out of control and I couldn't make myself think appropriately. Three years ago I was told by vocational rehab that I should stop working. Neither of my doctors nor I agreed. I did cut back my hours and am only now returning to full time, but I just couldn't give up at 30 years old. I was talking of that, and he asked another dreaded question, essentially why do I bother? I could just do disability and work part-time. That question, especially coming from someone who I know is not as sick as I am (but is on disability in large part related to something else), also just frustrates me to death. I am 33 years old. If I quit working I would be 33, unable to make my mortgage payments and therefore living with my mother, and I would have nothing structured to do. Not to mention, I did not fight as hard as I could to have a relatively normal life to give that up. Will I need disability eventually? Quite likely. I don't know that I'd go back if I have another major, months of disability, episode. But as long as I can work it is so important to me that I do it. There is nothing wrong with disability, but it is not what I am choosing. I fought so hard for years and I missed most of my 20s and early 30s. I'm going to enjoy every drop of life I can now that this is possible. And I think that nobody who hasn't been as ill as I was can ever understand.
Yet I hate dividing the already messed-up world of bipolar life into 2 camps, the ones who have been really sick and the rest. I still feel bad about the fact that to me there is depression and there is BIPOLAR DISORDER, and that I find there is a huge divide between bipolar I and bipolar II. You can find lots of writing about BPII being just as painful, but having been mixed and/or psychotic I'm here to tell you that it is much better to never experience those things, no matter how crappy you feel.
Nonetheless, I guess the lesson here is always to let other people have their own experiences. I've been sicker that many/most people with bipolar. I've also had some really horrendous med experiences, experiences that go far beyond "this drug didn't work and this made me manic". I've had severe lithium toxicity. There is nothing that will ever change that, and while I respect that others had unpleasant times, I deserve the same respect in allowing that 7 years and 40some meds (plus a clinical trial and taking huge doses of meds in combinations nobody else had been on) before I started to be well puts me in an unusual category.
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5 comments:
You're a warrior and a survivor. Your cousin's Sig Oth is lucky that he can't relate (even if he thinks he can), and he is lucky that he had someone like you to provide a little guidance and moral support.
It just sucks that there isn't anyone like that for you. Sounds lonely. :(
It's funny-I have a post I keep trying to write that is in the same vein-I get driven batshit INSANE (heh) by people who have had mild depression or anxiety, whose cases have resolved on their own or with therapy or a little ativan, who act like they've suffered SOOOOO much.
I get that pain is relative-but it's like you're saying-it minimizes true suffering and agony to link the two side by side. I've been through a lot, but thankfully not had the drug issues you have had..but I can't find a way to say any of this without feeling like an ass. But it bothers me, a LOT. Getting a little sad and feeling like jumping in front of buses, being convinced that people are all speaking poorly of you or that something unspeakable will occur if you don't do exactly one combination of things-not the same at all.
Sigh. I'm blathering. But my point it-I TOTALLY get it.
You do deserve respect - exactly the same amount of respect as every other person deserves. Extra respect comes with time and development of personal relationships, not simply with stated experience. His experience doesn't undermine your own in any way, they are different and aren't comprable. There's someone out there who has been sicker than you, but you wouldn't want them to under-value your experience. I assume in person you're able to show the same respect to others.
Ot girl- Thanks. I do know one or two people with similar experiences, online. I know nobody with the allergy issues, but that makes sense as most of mine are extremely rare. On the other hand, my dr. says I'm the highest functioning patient with my severity level she's ever seen, and she specializes in severe mood disorders. Nowadays I just am so thankful I'm well, and hopeful that someone else who is hurting can benefit from at the very least knowing I made it.
Thordora- I've written variations of this many times and have never published for fear of making someone angry. Clearly I have done so (see anonymous). It's hard, because I know that back when I only would get depressed, in the earliest years of this mess, I thought that that was as much suffering as I could handle. I've come to learn that it is best to never think that because somehow we can always handle more. Thank you for understanding what I was writing. Also, I love your profile tag.
Anonymous-
I think you maybe need to re-read what I wrote. You seem to have missed some things. For example "I think all bipolar patients have a rough time and I am no way trying to deny that."; Everyone's story is their own, and I respect that he has undoubtedly experienced things I haven't"; I still feel bad about the fact that to me there is depression and there is BIPOLAR DISORDER, and that I find there is a huge divide between bipolar I and bipolar II" Nonetheless, I guess the lesson here is always to let other people have their own experiences.";There is nothing that will ever change that, and while I respect that others had unpleasant times, I deserve the same respect in allowing that 7 years and 40some meds (plus a clinical trial and taking huge doses of meds in combinations nobody else had been on) before I started to be well puts me in an unusual category."
I think that I was quite respectful in what I wrote; in fact I used the word respect repeatedly. I am not putting anyone down. I am a healthcare professional and I spend my professional life teaching people to not compare their situation to someone else's. On the other hand, I remind patient's who have had strokes many times during their treatment that they aren't expected to heal at the same rate, or to have the same experiences in therapy who is recovering from say pneumonia. They have different degrees of illness. The same is true for psychiatric illness.
I've spent years working in psych facilities. I know better than most people what these illnesses are like in a wide variety of people. I've gotten a good look at what happened to someone like me a number of years ago when there weren't treatments for bipolar. And I've certainly seen people who lost much, much more than I have to this illness. On the other hand, in the years I did this, there were NO young people with severe bipolar. They were all responding to treatments. We had lots of young people with schizophrenia. But I was the person under the age of about 60 with the worst bipolar in that building. That was a pretty humbling experience, to be on the staff and yet so sick.
I'm sorry that I seem to have hurt your feelings. However, please read again. I have no interest in minimizing anyone's experience. However, if you've not taken the number of drugs, and experienced the number of years of your entire life being one long mixed episode, you can't tell me you understand what I've been through. I certainly don't understand the experiences of one woman I remember who was in her 70s and had not had adequate treatment until the things that were done had completed damaged her brain and nothing helped her. I don't understand what it is like when you fail on that last ditch drug. I got close, but I didn't have that experience. I know what the plans were for me when/if that happened, and trust me when I say I'm thankful every day that I avoided it.
There's another aspect to my experiences, and I should have said that. I don't point this out often, if ever, but I have multiple diagnoses. BPI, PTSD, severe generalized anxiety, possible OCD. That combination also makes my situation unique. And I don't go into that detail often because I don't like people trying to guess why I have PTSD, and the version of OCD I have is sort of weird so it's not visible but people hear OCD and start watching for repetitive behaviors.
I'm happy to discuss this further if you wish via email. It's on my homepage.
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