Chronicles of Life with Multiple Sclerosis
No, though, you really can’t. There are some things you CAN’T have legitimate opinions, even if you TRY. If you know nothing about it, if it’s not something you can understand or learn, then you just really can’t have an opinion on it.
My dad mostly keeps quiet, so he’s not as bad as my mom can be, because mom always has something to say, but his “opinions” are stronger, and meaner, and they are about things he cannot understand and he doesn’t even try to.
He’s talking to me tonight because he’s in a bad mood (stressed I guess because now he has to take on all the lifting responsibilities with my sister because my mom broke her tailbone, because now no one else in the house can do any of that, which can be pretty stressful and inconveniencing) about things that have to do with my body, and my illness, and my disabilities, and how I deal with it all. And so I finally just say as calmly as I can because I’m hurt and annoyed and I’m angry and I don’t want to go off on him “You know, you can’t really have an opinion unless your in my body, in my position.”
Of course though, everyone, THINKS they’re entitled to their opinion on everything. And on most things, you’re entitled to your opinion. But not everything, not this, not me, because I didn’t ask you, and you’re not me. At my age, you were lucky enough to be well enough to be treating your body like shit being a wild, redneck party boy in college, and have it STILL function for you come the next day, Dad. You got away from that one horse town, and your family (and though I know my father had his own struggles, they weren’t with his family, and I don’t think his family knew, and I can’t imagine his family did any of the things that mine now does to make this place a living hell, but even if they DID… he got to get out…) and you got to live life. You have stories to tell, you had friends, you learned to drive, and you went to college, you met my mother, you had jobs, and moved all over the country, and had jobs, and traveled the world, you DID things, more than a lot of people will ever do, and especially more than people like me can ever hope for, because right now… I’m just hoping I can ever further my education, ever hold a job, ever support myself. I can’t have dreams that big anymore, so you can’t relate to me. At eighteen, my life has screeched to a sudden halt, nothing is happening at all, and I have nothing, because I’m that sick, and you still are able to hold a job, walk long distances without aid (or stand long periods without fainting), you’ve never had to use a cane, crutches maybe for a short period of time with a brace on a limb after surgery or something, but nothing so humiliating as a cane which people associate with only old people using and even YOU and MOM make fun of me and torture me for, and you can adjust your sleep schedule as needed without meds (no nodding off in random places because you didn’t get quite enough sleep, or sleeping for 18 hours straight because you went to bed early), and things like that, that I can’t do. And that doesn’t even begin to cover the long, long list of things you can’t begin to understand, the things you’ve never experienced, the differences between you and me. But you’re telling ME that you understand enough to tell ME how to handle things?
Even NOW you have a body that functions probably better than mine. You whine about aches and pains and say “you know what it’s like and sometimes you have to do things you don’t want to even when you don’t feel good”, but then that shows just the extent of how little you understand, because it’s more than not feeling good. You’re 50, and so you’re gonna feel a little rough, since you’ve never paid wonderful attention to maintaining your health anyway. But I’m 18 and I did work really hard to keep my body healthy, so there is something wrong when I’m feeling this way. I’m not supposed to. And it’s more wrong than you apparently realize, and it’s obviously NOTHING you can understand.
You cannot have an opinion on how I handle my situation, because you have never experienced anything CLOSE to what I am going through. You perhaps use your experience of having had painful injuries in the past to relate or something, but in the end, they did surgery, and you were fixed. From what I can tell, no one intends to do surgery on my back, and even if they did, it’s not that simple. It doesn’t mean it’s fixed. And we still don’t know what’s wrong with all my joints, or why I’m so sick, or what causes a lot of my pain. What pain we can identify, no one can do much for yet, or they won’t. With your surgeries you were given stronger painkillers, loads of them to deal, and I’m given nothing that is strong enough to touch anything, given the severity of my pain and injuries, because I’m young and people are afraid. (I read everyday at least one more blog about someone having been diagnosed with a disc issue or who has one, and getting or who has a narcotic script to deal with it… I’ve never abused drugs, there is no legitimate reason doctors have not to prescribe me these things, for the record, it’s not like I could have come back positive on a drug test or something, but I’m just so young, and doctors just don’t want to trust teenagers with a script for lortab or percocet, even if it’s just a few for the bad days… but the point is, my pain WARRANTS medication that strong, narcotic medication is seemingly the standard treatment for the injury, so it’s THAT LEVEL of pain and I wish I could explain that to my parents without them jumping to the conclusion before I could explain I’m not asking them to try and get me these things or anything like that, that I’m a druggie or some shit, because that’s always where they want to go… they always want to think the worst of me, it’s like they get high off make me feel worthless.) So you really don’t get to have an opinion. No one has fixed my injury or tried even, and doctors don’t sense the urgency they seem to with adults to help someone who is sick, or injured, so my treatment (and diagnosis still, in some cases) isn’t a priority like it has been with so many health issue that both my parents have experienced, so no… unless you are me, or you REALLY, REALLY put yourself in my shoes, you don’t have a say, you don’t get an opinion. Not even an opinion. It’s not just that I don’t have to believe it. It’s that you don’t even get to have one. It makes no fucking sense for you to get to have one unless you’ve been me.
And you haven’t, and you know it. Never has a doctor accused you of being a drug seeker when you go to them with a SINUS INFECTION. (It was confirmed today at sick call, due to my severe allergies, I have yet another SEVERE sinus infection, and I was given an antibiotic shot, put on another rigorous course of antibiotics, augmentin twice a day this time, instead of levaquin once, and then a probiotic in between, so I don’t completely kill all my digestive systems good bacteria. The lady at the urgent care, story here, never even did an exam though, and insisted that I wasn’t having sinus issues and it was “tension”, though she clearly only thought I was there for drugs by how she conducted herself.) You’ve never had doctors in general treat you the way they treat me, you’ve never had to FIGHT for a diagnosis like I have, you’ve never had to suffer while you wait for someone who will believe you or who will run the test or who will have the answer or who will give you the treatment that will provide the relief you need. You simply go to a doctor, and they do their job, they work for you like their supposed to, because you’re an adult, and you’re not chronically ill, and you’ve never had a disabling injury that wasn’t just straight forward and simple for them to deal with.
How is it so hard to accept that sometimes you just can’t understand and you don’t get to have an opinion when you can’t possibly understand or relate?
Just shut the fuck up PLEASE. I’m sick of you running your mouth about what I should or shouldn’t do to help myself, because maybe I don’t always know what to do, but then, no one else knows any better, because everyone else seems to think this is some kind of game to me, and it’s getting on my fucking nerves, because this is the FURTHEST thing from a GAME in the WORLD to me. This is my BODY. This is my LIFE. And it isn’t much of one, but it’s all I’ve got right now, so again, kindly shut the fuck up about how I’m handling it.