The Things You Don’t Think Of
Well, you probably don’t think of them when you’re not the person most directly affected, anyway. This post is going to be short and sweet, but I think it’s important. Mostly because I myself am guilty of what I’m going to try to explain here. And what I understand of this, I understand because of the patient, thoughtful, and painstaking explanation of it to me by my bipolar husband, Alex.
Alex has Bipolar 1 Disorder, and nothing about it is fun. Unmedicated, his hypomanic phases are short preludes to pretty horrific and lengthy manias. He’s never had any symptoms of psychosis, but the extremes of his cycling are pretty severe. Fortunately (ironic as that term is in this context), he has tremendous insight into his own illness, and total dedication to treating it and staying on top of the often chaotic ebb and flow.
You would think that having his illness managed as well as he does would make everything just hunky-dory most of the time, wouldn’t you? Well, most people would, and DO. And that’s kind of the problem. There is a catch-22 here that most people would never even consider, and that is this: Even when you are open and transparently honest about your illness, as Alex is–everyone in our lives, from family to workplace to church to friends, knows about it–there’s a hitch. Because even with all proper treatment, bipolar disorder is prone to “breakthrough” manias and depressions, and that can cause disruptions in daily life, with work, family, friends, etc. Sometimes BIG disruptions, like not being able to get out of bed for a few–or several–days, or not being able to concentrate, or just feeling…”off,” and anxious to the point of distraction.
And therein lies the rub. When you’re “doing well,” especially the longer you’re “doing well,” then the more people expect you to ALWAYS be doing well. The reaction that comes from a crash of any kind is surprised, disappointed, even shocked. It’s as if every single time you have a good stretch, people seem to expect, if not totally on a conscious level, that you are “cured.” And sometimes, compassion, or the impression of compassion, anyway, can seem reduced, and people can seem impatient for you to “get it together” and “get back on track.” Very few people understand about breakthrough manias or depressions, and most seem to think that once you start taking medication, it’s going to work forever, so if you’re having problems again, it must be due to some personal weakness or omission. And even though I know that it’s a perfectly reasonable question from a clinical standpoint, given the low rate of compliance and insight among bipolar patients, when Alex and I get an emergency appointment with the psychiatrist because things are going awry, and the first thing he asks is, “Are you taking your medications?” I get pissed off.
I could ramble on about this for a while, but my point, for those of you who may be reading, who have significant others, family members, friends, who deal with mental illness and who try hard to keep things on an even keel, is…well, when there’s a blip on the radar, a wobble of the boat, or whatever other metaphor you want to use to indicate a break in the desired pattern of behavior: Try to remember that there IS an illness there, and that just because things were managed for a while doesn’t mean they always will be. Try not to be impatient with your loved one, because I assure you that he or she doesn’t want to be “off” any more than you want them to be. Give whatever support you can in getting things back on track, but give it with a compassionate spirit. If you have a compassionate friend who REALLY understands, then vent if you need to, but don’t vent to those who aren’t “in the loop,” because you’re only doing damage to their perception of someone you love.
People who are trying hard to maintain, and having a good percentage of success at it, shouldn’t have to think, sometimes, that it might be easier if they were just sick to the point of being totally disabled all the time, so that everyone else’s expectations would be lowered. And here’s where the tightrope-walk of a significant other comes in, because at the same time, you don’t want to live your life as if you expect things to go awry at any moment–or to project that feeling onto your loved one.
Nothing about this is easy, but one thing is sure. It’s a joint effort.
November 4th, 2007 at 11:08 am
Alex is so lucky to have you in his life. We are so lucky to have you in our lives.
Everything you’ve said is true– and as others have said here, too, those of us under the cloud want to be “cured,” too, and are also often shocked and disappointed at the breakthrough ups and downs, even when we’re being vigilant, and even when we know better. But feelings don’t always answer to reason. If they did, there would be no need for this site.
Belinda, thank you for the love, grace, truth, and understanding you display every time you write. If everyone had one person like you in their lives, it’d be more than a bit easier.
November 4th, 2007 at 12:42 pm
belinda – you have expressed this beautifully! thank you so much for your insight and understanding.
November 4th, 2007 at 1:50 pm
Belinda, this is SO true. I find this also happens with my son who has Asperger’s Syndrome. People think that once he learns something, he will remember it always and do it right each time, and that isn’t always the case. They get upset, even angry when he makes the same mistake he made previously. It is as if he should know better. I’m guilty of feeling that way sometimes myself; but he IS trying, and somedays that is all you can ask of him.
Love you, Belinda!
Shash
November 4th, 2007 at 1:55 pm
It’s great that you wrote this. People need to think about the way their actions and RE-actions affect others. So many of us spend too much time in the ‘me’ perspective.
November 4th, 2007 at 2:24 pm
Thank you for that last paragraph. I know for sure now that I’m not the only one who’s ever thought that it’d be easier to just always be unwell.
November 4th, 2007 at 5:05 pm
Shash, I can only IMAGINE how this syndrome would be magnified with a child who is “on the spectrum.” Because children grow, and mature, and learn, so the uninformed would expect a child to “outgrow” the disorder as they mature and learn. UGH. Hugs to you all.
And please don’t anyone think I’m some kind of saintly, ever-patient spouse, because I’m not. I screw up a LOT. My next post here is going to be about that, if I can work up the nerve to be that honest, and figure out how to do it without stepping on toes.
November 4th, 2007 at 10:05 pm
Thank you for this whole post. My circle of friends now has not seen me at my worst, so now that I have been struggling again, I often hear them say “You are not as bad off as you think. You’re strong and you’re doing well”. It’s frustrating, because I am seen as being better when I am absolutely not, simply because I was graced with a fairly long functional streak. It feels good to know that these kinds of misperceptions are common.
November 5th, 2007 at 2:08 am
((((((Belinda))))))
Thanks for putting into words what so many of us think and feel. Surprisingly, many of us who deal with mental illness, often after a long “good stretch” can even convince ourselves that everything is a-ok, then really struggle with the breakthrough mania or depression. We do want to be cured….normal. We’d like not to have to put our loved ones through trials, and upset. Thanks to all those out there who care enough not to be frustrated, and who do stick by us. Because believe it or not, your pain and frustration,and even disappointment…. it could never be matched by ours.
November 5th, 2007 at 8:43 am
Belinda,
My husband is considered totally and permanently disabled with his bipolar 1, but we still get that mix of blame and incredulity when his cycle isn’t controlled with meds. “He must be doing something wrong” or “maybe he’s just a jerk” is enough to make you want to scream–or cry.
I know meds do miracles for some people–and I know that we’d be in much worse shape without them, but you can’t just take a pill and fix this. If it were only that easy…
Oh and I’m the “perfect” wife and “strong enough to work through it” to the rest of the world, too. I guess I’m afraid not to be, but I know that my husband loves me more than anything and I know how he hurts–what choice do we have, but to be there to support them?
November 5th, 2007 at 2:52 pm
It’s easy enough to say “Try not to be impatient with your loved one, because I assure you that he or she doesn’t want to be “off” any more than you want them to be.” — but the truth is that we loved ones of people with illness like this do have responses, and it can be hard. For me, I’ve found that it’s not healthy for me to ignore my impatience, it ends up bubbling into resentment.
Mostly I tell my wife I love her and support her needs, then steer clear. It’s not always the best strategy. I’d be interested in hearing strategies for dealing with such responses.
November 5th, 2007 at 5:37 pm
Oh, absolutely. And I have, more often than I’d like to admit, thought of MYSELF first (or very quickly) upon the beginning of a “break.” It’s a bizarre mixture of totally justified emotional responses, empathy for your loved one, selfish (or self-centered) thoughts like “I can’t keep doing this for the next 40 years,” and then a helping of guilt for those thoughts…like I said–NOT EASY. And often, the mantra, “do not engage” is running through my head, while, at the same time, I AM engaging, and making things worse. This will be my next post, if I work up the nerve to actually spill it all.
As for strategies, the ones you hear most often in support-group situations are “do not engage” and “lovingly detach.” And you know how hard it is to do either of those things when these cruel afflictions have YOUR loved ones in their grip, or when you’re the target of frustration and pain, simply by virtue of your…well, being there, and available.
November 5th, 2007 at 9:50 pm
Right….having re-read my post, I realized that it didn’t come out at all as I intended.
What I meant to say:
Belinda….you are doing an amazing job…and the feelings of frustration, anger, disappointment…they are absolutely justified. I deal with bp 1, and deal with those same feelings; the ones that pop up when you really do convince yourself that maybe things will be ok this time.
Everything you wrote in your post rings true with me, and I appreciate you for writing it. It takes guts to deal with the emotions and continue to battle. I couldn’t even remotely imagine being the loved one looking on helplessly as yet again something happens. It’s funny though how the emotions that arise seem to echo each other. I suppose that is part of being human.
November 5th, 2007 at 10:26 pm
Jessica–I gotcha. I think what we’re talking about is simply the great empathy that people who love each other share. I usually try to do two things to facilitate this attitude in others, who aren’t “getting it.” One is to equate it with a disease of the body, instead of the brain…often, a light bulb seems to go off when they think of heart disease or epilepsy or something like that. The other is to have them imagine that this is their child or their parent, instead of my spouse, because too often a spousal relationship seems to be considered more…”disposable?” That’s overstating it, but you know what I mean. Like when things get bad, you just bail.
And I feel like I should qualify everything I say by emphasizing that the folks who ACCEPT and MANAGE their illness; well, that’s a whole different kettle of fish than trying to handle the problems that come with denial and non-compliance.
And I should add, speaking of physical illnesses: At the time Alex and I became engaged, I had a doozy of a disease, with a very poor prognosis, and very little understanding. He entered into a commitment with me with full knowledge of that, and no guarantee (or even much hope) that it would ever get any better. I don’t forget that, ever.
I have to say, this project is the most rewarding thing I’ve ever been involved with. I love it, and I love its community. I’m learning so much here.
November 7th, 2007 at 6:28 am
Belinda,
I totally agree with you on this one.I have found an excellent way (for me) to identify myself with my BPH.
Ladies and Gentlemen,I has me some Asthma. Seriously.I was born with it, was sick throughout my childhood.It went away for my teens (what a blissful time it was as well) and returned in my mid 20’s.I hate it.I hate having to take the three inhalers I have everyday, several times a day.I hate having to restrict my physical activity.
Mostly I hate colds.Colds, if left untreated (i.e. antibiotics immediately),can land me in the hospital quicker than you can blink.It always moves to my chest and then I can’t breathe.I use roughly 3/4 to somewhat less of my lung capacity when healthy so you can imagine.
Thus I have to be careful with myself.I try to not put myself in situations that will cause me to get sick.If the air is damp I wear a scarf, and I live in England y’all so I wear a scarf A LOT.I am constantly thinking about how to protect myself from getting sick, and I know it’s only going to get worse as I get older.Thankfully it’s maintaining now.
I realised not too long ago, because I’m quick like that, that this is exactly what BPH goes through.He has to take meds, he has to be careful of the situations he can find himself because slipping on anything might trigger an “attack”.
No matter how careful I am I still have blips.I got a sniffle in July (freakin July!) so I went and had a lie down.When I woke up two hours later I could not breathe and had to be rushed to the hospital.I was then off work for a week recovering.
The difference is?I have Asthma, a “real disease”.People don’t see BPH has having a “real disease” I don’t think.No one thinks I don’t have asthma anymore if I’m not wheezing do they?They don’t ask me if I’m taking my meds because if I didn’t it would be obvious. He just has issues, they think – get over it, buck up, etc.
I know it’s a totally lame analogy but it has helped me immensely.BPH looks after me, makes sure he does everything he can to keep me from getting ill.I just return the favour.
I can’t stand the “How do you put up with it”, “He doesn’t deserve you”, “You are so strong”, “You should have your own postage stamp” stuff.OK, no one actually said anything about a postage stamp but still.I look at it as doing what needs to be done. Hell I’d love to have a breakdown, I just don’t have the time!
November 14th, 2007 at 4:41 pm
I’ve been mentally chewing on the “problem” of high-function lately. I am high-functioning, bipolar II, and I think it’s exhausting. I am medication resistant so I require careful lifestyle management in order to sustain that high level of function. It is mentally exhausting to take care of myself all the time, to constantly fight the internal battles over simple actions like whether I will do that load of laundry. Some days it’s all easy and other days it feels like basic tasks are a struggle, like everything is a struggle. Some days you feel like it would be easier to just lie down and let them take you to the hospital because at least then you’d get a rest, a bit of a break from always having to have it together. Some people function like they breathe: automatically and without much thought. For me, and people like me, I function like an asthmatic: some days you’d never know I am sick, and others it feels like I am trying to breathe with mud in my lungs, gasping and pulling, trying not to panic, and respond in a productive way so that normalcy can return.
Your exhortation to your readers for compassion (not to be confused with enabling) is welcome.