Friday, April 10, 2009

“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 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…


  1. You have my support. I have MS, diagnosed in 12/2000. I know all about learning to cope and acceptance. I admire you greatly.

  2. You have my support, too. I have dealt with my chronic illness for 5 years now, and I still get annoyed by various well-meaning comments. I know I have to do pacing. I know I should not overcommit myself. I actively time-manage. And then life gives me a choice: should I go to a family reunion, which may be my last chance to see my very old and frail grandmother? Even though I know it's guaranteed to produce a flare-up? Should I go to this business trip, if missing it means that I and 2 other people risk loosing their jobs? Even though it will produce another flare-up? I think healthy people, and even many doctors, don't really understand what it means when they tell someone chronically ill to re-arrange their priorities, because they didn't have to face these horrible choices themselves.

    And even for "optional" things, like an arthritis walk - who is there to define what is essential to your mental health (including healthy, sane image of yourself)? While we all are forced to moderate what we do, cutting out everything but "essentials" can make your life an endless, dreary chore. So I fully understand where you are coming from, and I am sorry you are having to deal with insensitive comments.

  3. Wow. That is definitely someone who Does Not Understand.

    I don't have a diagnosis yet, but the two that my docs seem to consider most are lupus and/or MS. When someone asks how I'm doing and I mention either or both of them, the person invariably has one or more friends who was diagnosed 20 years and is very, very healthy and active and working full-time and raising young children and sounds like a saint. "Oh, they're really good at treating that now. It's no big deal!" they assure me.

    I'm really happy for those who are able to get so much done and be so functional, but that doesn't really change the fact that I'm not currently able to do much or be very functional.

    Anyway, this was a long-winded attempt to say that I totally understand where you're coming from, and I don't blame you for feeling irritated and/or angry and/or frustrated and/or whatever other emotions it dredges up for you. Even though I try to remind myself that these people mean well and it's not their fault they don't understand (because I didn't understand before I got here either!), I always end up gritting my teeth, smiling politely and changing the topic.

    Too bad we can't just let them walk in our shoes for a few months ...

    Hang in there!

  4. Leslie, I wish I could give you a big hug (I hope that doesn't sound condescending,I mean a hug of comfort AND commiseration).

    You know I have MS and like lupus, it is an illness that is misunderstood by Muggles. However, having said that, I do think the person who made that comment was well-intentioned. you have any rotten tomatoes in your hands? lol...I don't think it was necessarily bad advice. (I'm ducking now)

    I read it several times. I don't see that this person was telling you what priorities to have, but rather to choose your own. It is one of the suckiest parts of our illnesses that we cannot do it all anymore. We DO have to give up some things. I think this person just listed two that probably require the largest amount of energy as suggestions. But if those are the most important to you, than obviously something else would have to go, not those things.

    You are a remarkable girl (same age as my third, so I know you are a young woman but can't help calling you a girl :) ), you have SO much to offer the world in your intelligence and your enthusiasm. I think the person who left that comment was trying to support you in that. We don't want you to burn the candle at both ends and lose your eloquent voice completely in a wash of exhaustion and illness.

    I can also attest to the benefits of making a point to stop at least once a day (hard for a type-A!) and doing some simple focusing and breathing. Some call it meditation, some call it prayer, but it has been invaluable to me in organizing my racing thoughts. I have realized during some of these quiet times that some things I thought were essential were actually dispensable. Who'd a thunk it?!? :)

    Don't be too hard on your commentator. I think they meant well. Anyone who reads your blog could not help but love you and want the best for you in the shitty hand you have been dealt.

    Hang in there kiddo, you are doing a great job.

  5. I saw this Poem about Lupus and thought you might enjoy it too:

  6. Kelli, Mary, and Aviva - thanks for your support. It is much appreciated and I'm glad to know that there are others who understand my feelings on this and don't think I'm being over-sensitive about it!

  7. Marie, thank you for your comments and I kind words. I will say, though, that even though everything you said is true, much of it similar to the quote I provided, it doesn't read the same, at least not to me. Because I know you are coming from a place of understanding. I know, though, that everything you said is correct...

  8. J, thanks for the poem! It's really awesome. Kind of felt like my life in a nutshell...

  9. Leslie, I think you hit on THE really crucial point. This medium, the internet, blogging, is a remarkable gift of information and connections.

    However, it carries the pitfalls of a one dimensional form of communication. You cannot hear a tone of voice, see a concerned expression,ask for immediate clarification if something seems odd, or, as you perceived from the other comment, down right offensive. I really believe that person had your best interest at heart.

    And again I will duck tomatoes but...I didn't read in there that they weren't one of us. Unless I missed it? Entirely possible.

    I think I can take thing more patiently for a number of reasons. More time to realize life is too short to get my knickers in a twist. A few extra years to have a head start on getting used to my diagnosis (not quite there yet, though). But primarily I can put things in perspective thanks to my mother.

    My mother actually calls me and reads me obituaries of people who have died from MS. Yep, she does.

    Compared to that, I would be tolerant of the Spanish Inquisition.


    One final observation...I'm not entirely sure you were over-sensitive, but at this point in your life, you are entitled to be over-sensitive about anything you want!

  10. I think Marie is right that internet makes communication much harder. But, I think advice is tricky for folks with chronic illness even if it is given in person. One of the most painful advice-giving encounters that I ever had was with a person who also suffered from a chronic condition. It was in person, and she was clearly concerned. But she reduced me to tears by insistingly pushing that advice.

    It was a volunteer-run course on dealing with chronic illness. We were talking about sleep management. I admitted myself that I was having difficulty managing my sleep, and I needed a better solution. I was trying to make small steps towards it. The moderator tried to push on me the standard sleep management advice. But if I followed that advice literally, it would create about 2.5 hour period at the end of the day when I would be physically unable to do chores or exercise (because of pain), but would not be allowed either entertainment or communication with friends (no computer use).

    The person was very concerned for me, no question, and she clearly thought that she was going to move me to a positive change. And in principle I could make that accommodation - by taking up knitting or some other "gentle" hobby for those hours. Or even by learning to do hour-long relaxation sessions. But the problem was, it would involve a real loss. I have a full-time job, so social life, exercise, and blogs etc. all compete for limited number of hours, and something would have to go in favour of an activity that I wouldn't like quite so much to start with. And the advice-giver, in this instance, didn't seem to realise these emotional implications.

    I guess the lesson I took from that is that giving advice to someone about their personal life is fraught with potential issues, and more so if the advice involves a lasting life change. I personally try not to give such advice, or at least say something like "have you considered X, this is what worked for me" and listen to what the person says. But even that I would only do if the person requested advice. I think that commenter really blundered by giving "one size fits all" solution in a difficult and complicated situation, without being asked.

  11. P.S. In the end I sorted out my sleep without making the fairly drastic changes proposed by that person. It's not perfect, but it's OK enough to be sufficient, in my opinion. And, actually, some of that sorting out came from advice of my healthy friends and doctors. But all of those were people who suggested a bunch of things to try in a tentative and then discussed with me the difficulties I foresaw and practical ways to make things work. Again, a very different situation from just suggesting things that are good in general, but may touch on difficult emotional issues.