Archive for August 18th, 2016

Don’t ask; don’t tell – chronic illness edition (intersection with fat shaming)

It’s funny, but living with a chronic illness means that sometimes I feel like every moment of my life has to be justified and explained and asked permission for.  Especially situations when I appear to be having fun.

Almost everyone has an opinion on how I should fix things. Almost everyone has a hypothesis about what I’m doing wrong. Spoiler: it’s because I’m fat.

Persistent inability to breathe? Because I’m fat.

PCOS? Because I’m fat.

Depression? Because I’m fat.

ADD? Clearly because I’m fat.

Inability to gain rest from sleep? Because I like my cake, duh.

Weirdly painful periods involving enough blood to make my bed look like a murder scene? Because the gods are punishing me for loving my carbs, natch.

It’s my responsibility to keep going to doctors even though no one really has either solutions or even a proper diagnosis. (you’re just fat. lose weight and you’ll be all better.)

It’s my responsibility to constantly apologize for anything I do that is less than perfectly healthful (bonus negative points because no one really seems to agree on anything… except that I’m fat) and to essentially ask permission for being sick.

It’s my responsibility to try everything under the sun to fix myself, because if something isn’t working it’s because I’m not doing it enough. (oh, you have no energy because you feel like you can barely breathe all the time? exercise! oh, you’re walking 5 miles a day and it’s not helping? clearly exercise harder and more!)

And most recently?

My godmother very sincerely told me to never tell anyone about my health issues.

Not my future friends because they might stigmatize me or they might let something slip to the wrong person (read: everyone) and cost me a job or a promotion or an internship or *gasp* a relationship.

Not my future colleagues because of the same.

Definitely not my teachers or my supervisors because that’d be torpedoing my future.

Absolutely not anyone I might have a relationship with because … duh, who would want me if they knew of all this?


*blink blink blink*

So. This is a thing.


Fuck that thing.

For one:

I’ve never been much for the dark secret conflict plot type of romance novels and so I really don’t intend to write that sort of bullshit into my life. Besides, “I live with a chronic invisible illness that no one can diagnose and no one has solutions for” is a pretty shitty sort of dark secret in terms of jaw-dropping drama bombing.

Even though, seriously, I think it might be legit grounds for divorce for keeping this sort of thing from your significant other. Chronic invisible illnesses might not make for awesome screentime drama-emoing, but in terms of how much it actually affects a life with another person, it’s a sight worse than having a secret baby or being a step-sibling or being the bastard love child of a mafia boss or whatever is trending right now.

For another:

I don’t want to be any part of the crazy. I don’t want to be friends or lovers with someone who doesn’t get it because this isn’t just about me, it’s about everyone else dealing with the bullshit.

I’m not going to be part of the problem. I’m not going to go around indiscriminately screaming about my issues, but you can bet your entire net worth that I’m not going to hide it from people who intersect my life in meaningful ways.

I have a chronic illness. No, I don’t know what it is. All I know is that it affects almost every aspect of my life. I often can’t suck in enough oxygen to keep my brain going. I can sleep for sixteen hours and wake up exhausted. I very often have only just enough spoons to get out of bed and keep myself fed (and sometimes not even that). I get drained by social interaction, no matter how much I enjoy it or how much I like you and if I get too drained, it can be bad enough that I have to retreat to bed for a day or two. I get random weird pains that might or might not land me in bed for days from the most innocuous of activities (once was laid up for seven days with debilitating lower back pain after I attended a three hour seminar; should make going back to school where all the classes are in three hour blocks very exciting in that roulette sort of way).

And now for the non-Hallmark sidenotes:

No, this doesn’t make me “stronger” as a person. I survive. I often feel like I survive badly. I don’t see much benefit to living with this level of quality of life. If anything, I sometimes feel like the smarter, braver thing to do would be to just end it.

No, I’m not a magically happier person. I don’t necessarily appreciate what I have more when I have the wherewithal to appreciate it. Oftentimes the not-bad days are crammed with “must do all of the things to keep life moving” rather than “oh my, this is nice, I’m going to enjoy life because I can actually smell the roses without shooting pain through my back today”.

No, I don’t automatically have some sort of wisdom or patience or whatever qualification for sainthood because I live with pain, almost perpetual exhaustion and a persistent lack of oxygen.

I’m not saying I’m a special snowflake. Having a not-perfect body is part of life and almost everyone will encounter a phase like this at some point. There will always be someone who is suffering more than me; that doesn’t in any way negate what I experience daily.

It’s your choice whether or not to make allowances for my limitations; I don’t expect it. All I ask for is the basics of respect and humanity.

I make no excuses, give no fucks, and tell it how it is. You should feel free to do the same.

I can be a flakey friend. I routinely drop off the face of the planet when I get sick. It’s your prerogative to decide you don’t want to deal with that.

I can be a difficult person to love. I have limited resources and the answer might be “no” a lot of the time. It’s your call as to whether that’s a deal breaker.

That’s okay.

I’m going to be honest about my limitations. You should definitely feel free to do the same.


P.S: No, it’s not because I’m fat.