I’ve thought a lot about whether or not I wanted to do this, you know, mostly owing to the fact that: multiple sclerosis and depression are two different things, entirely. Except, well, you know, the fact that those of us who have multiple sclerosis are extremely likely to also have comorbid depression. On that front, I’ve always found a weird little blurring of the lines between situational and chemical depression because, well, come on. You have an incredibly unpredictable disease which may or may not cause a host of really fucked up things to happen to your body at any given time. I’m not in a flare right now. I’m pregnant and this often eases the symptoms. Problem being, after you give birth? Your odds of dealing with everything I’m about to throw down for you are greater, and you have a new born. (Edit to add: I miscarried, so that’s no longer relevant and yet, it is. The flare up after the miscarriage hasn’t been fun and I get the added bonus of being really heartbroken to boot. Fun.)
It’s kinda likely you will be depressed about this. Take a walk with me. Let me show you some things. Consider me your Ghost of MS Present. Do these things happen with all MS patients? Nope. Unpredictable. Relapsing remittant is both a blessing and a curse. It’s a blessing because the disease doesn’t progress with quite the intensity as it does in Secondary Progressive or Primary Progressive- which just typing makes me feel like dog shit. (I hate hearing “At least it isn’t…” because for someone, it IS. That is an asshole thing to say.) It’s a curse because well, people are dumb and being terrified every time you get a sniffle that your body’s gonna go “OK! Let’s have some lesions! Attack! Attack!” and your 48 hour bug becomes 48 days. (Or worse. Or less. Who the fuck knows? You never do. That’s my point.)
First off, the odds of depression due to the medications we have to take…And oh, we have to take a lot of them- even those of us who avoid the bulk of them. (Realistically, you cannot avoid them all and do not ever allow one of those hack shills to tell you otherwise. I did that for a long time- managed without any medical help whatsoever. I had no choice. I’ll get into that gem in a minute, too.) Prednisone, to me, is a godsend.
But you know what prednisone is? In a nutshell, it’s a synthetic version of this neat little hormone in everyone- cortisone. Cortisone is what they call a 21 carbon stress hormone. In English, it means that it gets your body screaming MOVE YOUR ASS GET READY TO FIGHT OR RUN LIKE HELL MOVE IT MOVE IT MOVE IT. Nah, you couldn’t possibly have any side effects from that, or, well, teaching your body it doesn’t have to make as much, and then coming off of it. (Which trust, you don’t wanna be on this shit very long- even though, truthfully, I’m on it and I am all MIGHTY AND POWERFUL GAWD IS MEEE. Because, well, being able to function does that.)
Let’s throw in the fact that people have absolutely no idea what’s going on with you because, well, for months and months you feel like complete and utter dog shit. More tired than you have ever been in your entire life- save, for perhaps that last neuro event. Some of us lose control of various parts of our bodies. Some of us experience what I can only describe to you as massive charlie horses. All day, every day, up and down one or both legs.
Do I need to get into the upper body shit? Okay, well…once, I lost the vision in my right eye. Maybe doesn’t sound like a huge deal to you, if it’s never happened, after all, you got two eyeballs, dontcha garl? For me, and for most, optic neuritis isn’t permanent. But do you know what happens when one eye goes on the fritz and the other has to work harder? That damage is permanent. I also have had more than one flare up where I lost bladder control. Yeah, let your mind take you there, losing bladder control and you can’t move quickly because your right leg does the jitterbug out from under you.
And then, if you’ve got RRMS…you go months where you’re fine. Or you don’t. Again- unpredictable. I personally will be my peppy, hard running, move yer butt super gal for months and then ….POW. Fucked up. It’s hard for people to understand that. “Wait wait, weren’t you JUST hiking and climbing…but now you can’t get up the stairs? What the fuck is going on?!”
I could go on, but I think you get the idea. Depression is so easy, when you have MS. It’s easy because you think about all of this, and it’s not just thinking about you- oh no. You also begin to consider your loved ones and the high probability of what they may one day need to do for you. You also deal with quite a few of them completely denying that it might- which, is understandable, everybody wants to feel that way, especially you- but it also just screams, “LALALALALALA, can’t heaaar you!” which also kinda says, “I can’t even fucking deal with the possibility, you really think the reality is gonna rock my world?” so, you let your head take you some fucked up places.
You know you shouldn’t, and yet you do.
It gets worse when you tell others about that and they get insulted. It’s really one of those no win deals.
It’s also oh my god so easy to let this define you. I really hate those lists. 390 Things People With Invisible Illnesses Think You’re a Douche For. I get them, I laugh at them. But this isn’t a club. This isn’t a status symbol. You not getting it doesn’t make me better because I do- matter of fact, it sucks. A lot. I don’t WANT anyone to get it. If nobody in all the world had to understand what having MS is like: that would be brilliant. Because it would mean, nobody in all the world had MS.
That’s privilege there, and a reason I get pissed about the lists, a reason I get pissed about the way that particular concept is often conveyed. The thing is, it doesn’t mean someone who doesn’t have that privilege sucks. It doesn’t mean they are stupid. It doesn’t mean they cannot understand and when those of us who do all too well throw it out there like The Best Insult Ever- that’s exactly what we do. Oh yes, let’s alienate people we want to listen and understand what we say. That works out best, always. I know I totally wanna listen to someone who calls me a fucking idiot because I can’t wrap my head around an experience fully for not experiencing it. I’m just gonna say it now- even though it’s a totally separate issue: thug has become nigger. Privilege has become dumbass.
Both of those are hateful and fucking damaging and we need to knock that shit off. Do not sit here and tell me that it’s okay to be like with like. I understand damn well why- I have done it myself. But it’s NOT constructive. I sure as hell am not going to tell any black person not to call one of the assholes who uses thug a dumbass or not be angry. Nope nope nope. Not my place, and not my fucking struggle, and I won’t demean it by some sanctimonious shit lecture about “kumbaya, let’s all just white wash and pretend magic fingers take it all away” when it does not. BUT, for those of us who are allies- let’s fucking stop with flinging “privilege” around like we don’t have it. We’re the bridge to understanding. Plus, that’s a great damn counter to that whole “Oh, you just got white guilt” shit. “Guilt? Me? No. I’m just saying I don’t know what it’s like. That’s true, yeah?”
Because privilege is real and if you are someone with any sort of “not privileged” status: you know how very fucking real it is. Yes, sometimes people with it are dumbasses. But that’s not what it means.
Well, that was a tangent and a half. I have like four more posts in my head on that one. Oops. Back to depression and MS.
I never actually dealt with depression before I had MS. I dealt with rage, mostly. While it’s true sometimes that rage would bubble up so hard I’d feel like there was only one way out- I never had the kind of suicidal thoughts I often do, now. (Don’t. Just don’t. I don’t want to die right this second. When I get there, I’ve got people who long ago threw the rope down the well so I know to climb out.)
I am not going to sit here and lie to you and tell you that I never go there anymore. The last one was the unbelievable frustration of knowing that if I just stopped working- I could get the care I needed. But if I don’t- no insurance for me. That’d be great. If I was okay with my family living in poverty- which I am not.
(There is no shame in it. I’m not trying to say that, but you need to see the frustration here.) Lots of people with depression deal with that shit, too.
I get the added bonus of being a skinny ass white girl with a lot of bad tattoos. Ever try going to the doctor in tremendous amounts of pain, looking like you haven’t slept in a year, being a skinny ass white girl with a lot of bad tattoos?
Yeeeeeeah. That’s fun.
(Back on privilege- that doesn’t mean I totally understand the same shit that black people deal with. Because they were BORN dealing with this shit. I can, however, wrap my head around it a little better for my experience. And it sucks. It fucking sucks. But as much as it sucks, I don’t have to try to tell my kids how to not get shot by the cops because of what I look like. So, yeah.)
Wait wait, what the fuck? Hey, Victoria, why do you keep bringing up privilege in this?
Aw, hell, this is some Aesop shit, isn’t it?
Yes. Yes. It is.
How about instead of comparing ourselves, instead of getting defensive when others point out that we don’t and can’t get it- we figure out that every one of us has some area of our lives where others may not get it? And from there, begin to understand a little better, rather than hate eachother even more or using the struggles of others to develop some sick activist rock star status?
Because, and I rambled and this seems almost not that coherent- the point here is two fold. If somebody tells you that you have privilege in some way: odds are pretty good you don’t in some other way. That isn’t your defense- nor should it be, because this isn’t something to be defensive about.
But also? Stop misusing the word when you mean “dumbass”. It’s totally okay to call a dumbass a dumbass. And there’s a whooole lot of that going around.