Thursday, March 5, 2009

Holding Ourselves (And Others) Accountable

For me, there has been a lot of self-blame that has come with illness. It’s easy to see how that can happen when people who are young and healthy abound. That said, I think it’s important to step back and acknowledge that our illnesses don’t only affect us. They have a broad impact on our lives, including the people we surround ourselves with (even those who are young and healthy, and who act like they don’t care).

As I’ve counseled several friends recently in various aspects of their lives, it feels good to finally be able to give advice to others. I feel like I’ve had the monopoly on being the advice getter for a while now, so to be in the position of advice giver feels pretty good. And I think this is key. Sometimes we need to look at our situation from the outside in order to gain the clarity we need – or we need to look at the situation of others in order to look more positively and compassionately at our own.

From Patient to Doctor (Sort of)

I think sometimes we need checks on ourselves. Not like, “Oh, am I still breathing?” kind of checks, but rather, “Am I doing the best I can?” kind of checks.

Being chronically ill, rarely leaving the role of the patient, holds a person accountable. Every day, I am accountable to myself: Did I take my meds? And did I take them at the right time? Am I eating well and/or enough? Am I getting enough rest?

It is certainly tiresome and annoying to never turn off that voice inside my head that cycles through all the things I should be doing to be as healthy as possible. It is frustrating to have to be that disciplined. Because let’s face it, when you’re chronically ill, staying healthy can be a lot of work. But it is also good to have built in checkpoints for myself. When dealing with a set of unpredictable illnesses, it is often easier to deny having any control at all than to take responsibility for the small aspects that I do have control over.

Running around for eight hours on two Pop Tarts and coffee, for instance, is not smart. And at the end of the day, I pay for those kinds of lapses in judgment. I can’t push my body to the breaking point anymore. If I push, my body pushes back at me even harder.

And after round five*, I’m down for the count.

From Insider to Outsider

I’ve gotten used to the fact that only the people that truly care about you ask how you are doing. And it’s hard when you’re chronically ill, because that question is kind of a red herring. But when someone actually offers real compassion and concern, it really strikes a cord. And it is difficult to see the pain and anguish on someone else’s face when they really want to help, but there’s nothing they can do. If I could reach out to those people, I would tell them that just being there is enough. Because it so rarely happens that a person asks how you are doing in more than an obligatory fashion.

It’s hard when someone is asking how you are and they are standing face-to-face with you expecting an honest answer. Trying to be tough and fighting back tears, it seems the only real answer I’m able to give most of the time is I’m okay. I’ll be fine, even when my whole body hurts and the pain is so intense that I can’t think about anything else.

And I can imagine that when I do end up in a serious, long-term relationship, it will probably be much harder for that person to deal with my illnesses than it is for me. I think at this point I have a pretty high pain threshold, although I do tend to get cranky when I’m really in pain. But for a person to have no other choice but to sit idly by when a situation seems to demand action is difficult for anyone.

I know this because I’ve heard that same despondency in the voices of my parents many times. Just tell me what I can do for you. Isn’t there anything I can do? And usually, there isn’t. It’s hard to live in a world where few people are willing to help, show care or concern, and those who are and do, can’t really do anything. I feel the pain of that, too. And I definitely wish that I could spare them that pain.

From Doctor to Patient

I recently spoke with a doctor I know who is dealing with illness. This isn’t one of my personal physicians, so it’s not so weird. But I definitely felt bad, as this person expressed finally knowing what it was like to be a patient, and not liking it very much.

In some ways, I almost wish that at some point, all doctors could experience this. Not that I wish sickness on anyone, but I wonder how care and demeanor would change if doctors knew 1/100th of what it was like to be a patient.

Unfortunately, I guess I’ve gotten so used to being sick, that I forget that people can potentially go their entire lives without having a major health crisis. It seems unlikely, but I guess it does happen. So it definitely makes me wonder how many doctors have actually experienced what it is like to be a patient, especially in a long-term scenario.

I wonder: Do doctors get better care than we “non-physician” patients do? Are doctors’ bad patients or do they actually comply with the orders they are given by their own doctors?

It’s difficult for me to imagine how things would look if the situation was reversed and doctors became patients, but I can only imagine that it would give a whole new meaning to compassionate care.

From Patient to Care Giver

Lately I’ve been having difficulty managing my health. There are a lot of reasons for this, but it strikes me as odd because if I was a caregiver to someone else, I certainly wouldn’t shirk, or at least I hope I wouldn’t, on taking care of that person.

If it were an immediate family member or any other important person in my life who was ill, instead of me, there would be no decision about what would come first in my life. The priority would be obvious and straightforward (hopefully). Even if they didn’t want me to, I would probably try to drop work or school (or whatever) to be there for that person. So why can’t I do that when it comes to my own health? And why do so many of us push through, even taking on additional care giving tasks along with being chronically ill, yet so often put our own health and well-being at the bottom of the list?

“How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these.”

- George Washington Carver

Because the role of being a patient is ever-present for those of us who are chronically ill, I think we tend to forget that we are held accountable for other aspects of our lives, as well. As people, we are held accountable for our attitudes. No matter how little control we have in our lives, the one thing that we always (for better or for worse) have the power to control is our outlook on life. Because the truth is, doctor or patient, insider or outsider (etc.), we are the makers of our own happiness.

* how many times a day I take meds...


  1. I just wanted to tell you that I love your blog and am an avid reader.

    I too suffer from a chronic disease and totaly get what you were saying in this post about people who truly care about you and want to help.

    My husband is a "fixer" so to speak and I feel so bad when he asks me what he can do to make things better and there honestly isn't anything that he can do for me. I hate the fact that my disease makes him feel so helpless, I see the care and concern in his eyes and it is enough to drive me crazy much of the time.

    Please keep writing your blog, I learn so much valuable information from you and it is nice to know that I am not the only one who has these feelings.

    Thank you for taking the time to read this.

  2. Thanks for your comment! I'm sorry that you, too, have to face illness, but I'm glad that you feel less alone by reading my blog. Your comment makes me feel less alone, also.

  3. Leslie,

    So much of what you wrote mirrored what I had been writing about lately too, see great minds really do think alike!! ;-) I think one of the most important things we can do as chronically ill people is to be honest with ourselves, and you do this so beautifully!

    Thanks, as always, for a thoughtful and thought-provoking post!

  4. Thank you for your post, Leslie. I'm a medical student who has a chronic illness. It's hard having peers and colleagues who don't understand the power that doctors have in the patient's experience of illness. I, too, sometimes wish all doctors could experience being a 'chronic patient', maybe they would spend more time addressing psychosocial issues (which, contrary to popular belief, does not take more time - it just means listening to the patient instead of interrupting them within the first 10 seconds of their appointment!). At the same time, the system is set up to almost suck the compassion out of medical students and so when we go out into practice, we've lost a lot of the reasons why we came in. Anyway I'll stop blathering. Thanks again for your insights.