“Frankly, My Dear, I Don’t Give A Damn”

It is a rare occasion that I air my feelings about comments left on my blog publicly. But in the haste and hurry of Grand Rounds, the following really got my blood boiling. The comment was left on my post, “Unnecessary Complications”*:

No problem...you are over extended and a little burned out. Don’t make major decisions like dropping out of school just yet. Make a list of everything you are doing. Include everything and prioritize the list. Make sure you put rest and relaxation on that list too. It should become obvious that there are some things that are not priorities that you can drop. Do you really need to speak at a conference or lead that arthritis walk? Learn to say “No”. I know it is hard when everything seems important but taking time to just “be” will energize you for the important things you want to get done. Good luck.

Okay, so I think it’s safe to say that everyone, including me, has established the fact that I have taken on too much!

(Gosh, I really hope this person isn’t a brain surgeon…)

But where does this healthy person get off telling me what should and should not be my priority? Because as a matter of fact, I see the DePaul conference and the arthritis walk as important steps for me in coming to terms with my illnesses.

Need I remind you that I was diagnosed only a year ago? I’m still at the beginning stages of this coping business…

I guess when hosting Grand Rounds, you run the risk of people unnecessarily thinking it’s okay for them to offer an opinion on a situation that they know absolutely nothing about.

This person makes it sound as if the situation is simple and clear-cut, as if I could simply “empty my plate” and all my problems would be solved. But it’s not easy, as all of these commitments I have made are integral parts of my identity, of who I am as a person, and without them, I don’t know what to do with myself.

I don’t get the sense that this person understands what it’s like to be in an academically stringent graduate program while chronically ill. And they don’t understand what it’s like to be in an environment where your priorities are different from everyone else’s. The day in and day out sludge of graduate school is hard enough on its own, add illness to the mix, and you’ve got a giant barrel of fun.

I don’t think this person was trying to be hurtful, but they weren’t being helpful, either. Everyone is absolutely entitled to his or her opinion and I don’t expect readers to agree with me all the time. But if you are going to give your “two cents,” it should either be because you know what I am going through, or you’ve been to my blog more than once.

To me, this brings up an issue that exists for those who are chronically ill, and it pretty much exists for everyone, which is that sometimes, well-intentioned opinions and advice just suck. Period. Full stop.

I know I’ve read that people have said horrendous things to other bloggers, like that they are lazy or should believe in god more, and shit like that. But regardless of what is said, the ignorance is palpable, and quite honestly, infuriating.

This is also about taking a stand, and sticking up for myself when people say things that they shouldn’t, like when someone tells me Oh, I have a friend who has lupus and she’s perfectly healthy. Usually I just shrug my shoulders a give a sheepish grin.

I know, I’m sure this person was just trying to be helpful, as well, but do they realize that it doesn’t come off that way at all? To me it sounds like victim blaming. Like not all lupus patients are as sick as you are, so what’s your problem?

Honestly, it’s people like this that make being sick difficult. It’s not about the fact that I don’t have my priorities straight. It’s about the fact that I have to mourn the loss of the life I will never be able to lead (that I’m desperately trying to hold onto), the one that I spent nearly 22 years building for myself. I have to come to terms with the fact that those who I have met since I got sick, or those that I have yet to meet, will only know me and my life with these illnesses. That’s something I find very troubling. And that’s something that healthy people can’t possibly understand until they’ve lived it.

This doesn’t mean that the life I was leading before was healthful, and it’s even less so now. But that also doesn’t mean that I can wake up tomorrow, and poof, that other life no longer exists and I’m totally fine with that.

I’m really tired of dealing with ignorance and stupidity peaceably (read: by not saying anything at all). While these kinds of comments obviously do hurt on the inside, on the outside I would like it to appear that I don’t care. But of course, I do…

So before you offer advice that has no bearing on my life or anyone else’s, maybe you should think about what it would be like to walk a mile in my shoes, hell, even a block in my shoes, before you pass judgment on how I live my life.

It’s called tact, people. If you don’t have any, maybe you should consider getting some! (And maybe ask for a side of compassion and empathy while you’re at it…)

* The comment referred to has since been taken down. This post wasn’t meant to call this person out, in particular, but rather, to point to a larger problem that exists in the gulf between healthy and sick people. And I’m getting kind of “sick” of it…