Friday, April 17, 2009

Secondary Effects of Chronic Illness

Doctors talk a lot about secondary effects of illness. For example, gastroparesis means your stomach muscles are paralyzed. That is the primary effect. The secondary effects are nausea and vomiting -- the effects of paralysis of the stomach muscles. The primary effects of Crohn's disease is inflammation of the lining of the intestines. The secondary effects are those that flow from the primary effects -- diarrhea, pain, fatigue, etc.

What doctors don't talk a lot (enough) about are the secondary effects that are emotional in nature. The more I go to the bathroom, the tireder I am. And the greater my fatigue, the harder it is for me to filter my emotions. So if I'm angry, the anger gets a voice even when, on a better day, I might have been able to talk myself into sucking it up and not expressing it. And I cry more often when I'm that kind of tired -- not tired that goes away with sleep, but sick tired. It's just that much harder to cope, to repress emotion, to put on a happy face, when you're bone tired, when you're so dehydrated that you have palpitations, when you are in the bathroom 10+ times per day.

So I yell at other drivers -- no big deal -- lots of people do that. I get distracted when I'm on the phone and I get an email and I can't force myself to focus on one at a time, which can be annoying to the person I'm talking to. I get angry at a family member because I think it's "safe" to express myself to someone whom I think ought to "get it," but they don't, so my brother wants nothing to do with me, and my dad keeps a safe distance. And once in awhile, I react inappropriately in business.

I work very hard at this last piece. I cannot provide any less of a service to someone on a day when I'm sick and tired than I would on a day when I'm feeling okay. I cannot voice frustration or anger. I cannot express emotion, truthfully. The world seems to think there is no place for emotion in business, and whether or not I agree, I have to conform to the norm if I am going to be successful in business.

The vast majority of the time, I'm fine with this. But I have to admit that there are times when I allow my feelings to show, when my filter just doesn't work right. It's always when I'm sick and exhausted -- always. The emotion is honest -- I actually think it's sort of puritanical and fake for everyone to be cheery all the time, to insist on excluding all emotion from certain relationships. But it doesn't matter what I think, because others will judge based on the norms, and the norms are that emotion stays out of it.

A couple of weeks ago, I got angry at a woman who refers a lot of cases to me. We have a protocol. She knows I need time to collect medical records and write the appeal. But she had a case with a 60 day appeal period and she sat on it for 30 days before referring it to me. And then she sent me a second case that was supposed to be a first level appeal, but it turned out to be another 30 day deadline. You have NO idea how hard it is to gather medical records in 30 days. In one of these two cases, there are 5 doctors, so that means getting records out of each of them. It's very time consuming, to say the least. So I emailed her, reminded her of the protocol, explained the position that these 2 short-term appeals put me in -- and I shouldn't have done any of that. I should have quietly told her boss. I should have asked to review our protocol. I should have done anything other than express the fact that this was very upsetting and difficult for me. I didn't yell or curse or anything, but I let her know how upset I was. And there's no place for that in business.

Maybe you will think blaming my illnesses for the lack of an emotional filter is letting myself off the hook too easily. But I spoke to a woman yesterday evening whose boss is treating her badly due to her illness. She kept falling into sobs and tears, and then apologizing and reassuring me that she's not usually so emotional, that she's very business-like. She's sick as a dog and may be losing a job she's had for 15 years. Emotion is pretty normal. But the fact that she couldn't stop herself from expressing it? I think it's a secondary effect of her Crohn's disease. She had no filter. The energy it would have taken for her to moderate her communication to me just wasn't there. She was too wiped out and worn out to talk to me about this emotional issue without showing me that emotion.

So I don't think it's just me, and I think it does have to do with illness. Part of it may just be the anger at our illness, right? We're mad as hell that "fate" (or whatever) chose us to bear this burden. But I think exhaustion -- that bone tiredness that doesn't go away no matter how much you sleep -- plays a huge role. And that exhaustion is a secondary effect of most chronic illness.

Earlier this week, the NY Times ran an article on clostridium difficile, or c-diff, which is the bacterial infection I have now. They talked about two patients -- one who missed 20 days of work and one who was hospitalized for 2 weeks. So here I am, with my Crohn's disease and gastroparesis and c-diff, going to the bathroom no less than 10 times a day, on antibiotics since February almost non-stop, having to deal with all of this while traveling and working 12-15 hour days. Not only do I not miss 20 days of work -- I don't miss one! And for the most part, I am overly sweet to people to compensate for my fear that I will react without a filter. I am the broad shoulders the world can lean on, just to compensate for the fact that I know I don't have an ounce of energy to spare.

But I win no awards for not taking sick days. The one time my emotional filter fails to function as I would like it to, I don't get understanding; I get called on it, I am ashamed of myself, I am hurt that I am so misunderstood. I wonder -- would it be better to just say I'm sick and I'm not taking on any new cases until I'm feeling better? Would that be easier for other people to understand and/or respect?

I don't know. All I know is that the fear of falling behind is so great that I do not take time to rest -- how can I rest knowing that I have appointments out of the office almost every day next week, so there will be little time to catch up on anything. I do my best to remember to filter my emotion. When I feel the emotion rising, I look for my cat Emily, or now I look for Amieta and her smile at me, because they set my emotion back to equilibrium. I try. But I am not perfect.

Maybe I'm making excuses for myself. But because I see this in so many other patients, I don't think it's that. I think this is part of being sick, of flaring, of getting something "extra" like c-diff. I think it's about exhaustion. I think it's about losing one's filter.

Unfortunately, they don't make medicine for this. Jennifer

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