01 November 2011

It's Okay to Have a Good Day

There's an old meme that says, "I may have Crohn's disease, but Crohn's disease does not have me!"  It sounds defiant and optimistic, but I have to confess: I haven't really bought into it.  Same for depression.  I'm sure people with other chronic illnesses can substitute their diagnoses and share my feelings on the matter.  It's a nice little bumper sticker or Facebook wall photo, but the truth is that it's damn hard to avoid feeling like a chronic illness's personal punching bag.

I have Crohn's disease and I've been fighting chronic depression for ages.  The nature of a chronic disease or illness is different from one that can be overcome because there's no actual end to them.  The best you can strive for is a period of calm.  Sometimes that in itself can be overwhelming; it's hard to enjoy life at all when you feel like your objective is not to enjoy life, but to enjoy some of life some of the time.

For me, I found that after a while I reached a point where I didn't even want to have a good day.  Part of me feared it meant I wasn't "really" sick; if I could go to see a movie on Tuesday with my wife, then why couldn't I hold a 40-hour a week job?  If I could take a walk around the neighborhood, why couldn't I drive?  I was afraid that good days would expose me as some kind of fraud.  Of course, I really am sick and just because I can go to a movie on Tuesday night doesn't mean that Wednesday won't be terrible.

The other primary reason I came to resist and resent good days is that I came to feel I didn't deserve them.  This was entirely the work of depression, of course.  It's an insulating disease that doesn't want you to have any bonds with other people.  It thrives when it can prey on its victim in isolation, and one of the ways it does this is to convince you that you have no business being around other people.  They'll have a better time without you.  No one wants to have to hear about your bad days and you shouldn't even admit you had a good day so what are you going to talk about?
Photo from http://depressiontreatmenthelp.org/clinical_depression.php
As a child, I once fibbed about being too sick to go to school...and then I got sick.  Ever since then, I've been reluctant to exaggerate the condition of my health to duck out of things.  It's time I came clean, though.  This past year, I have occasionally--perhaps often--outright lied about how miserable I felt physically to avoid going out and being around family and friends.  The truth is, I wasn't mentally healthy but there was no way I could say, "I'm too depressed to go to the barbecue" or "I don't feel like I'm good enough to go to a Reds game with you."  So instead, I said I felt too bad and let it be assumed I meant my guts.  (Though there really was a day this year a friend invited me to a Reds game and my back honestly did hurt way too much for me to go that day!)

I know how absurd this all sounds to those of you who have been fortunate enough to enjoy good health.  Your default is to assume that you'll have a good day--at least, physically--and that if you get sick it'll be over in a day or two and then you get back to having good days.  It's the opposite with a chronic disease.  Even in remission, your default is to wake up fearing that today will be a bad day and you only know it was a good day when the day is over and it didn't turn into a bad day.  After a while, I came to resent the disruption in my default.  Let every day just be bad so I can have consistency, I thought.

Last year, I read that living with chronic illnesses like Crohn's disease can create emotional damage comparable to post-traumatic stress disorder.  I would never equate my gut troubles with living through the atrocities of war, of course, but I'm beginning to realize what they meant.

Even when you accept that you have a given condition, every day forces you to acknowledge it all over again in new ways.  "I have Crohn's disease," you think when you get up in the morning.  Later that day, someone invites you to dinner but you find out they want to go to an Indian restaurant.  "Sorry," you say, "but I can't handle Indian food."  The next day, someone has an extra ticket to a concert.  You want to go, but "Sorry, but I'm afraid of crowded public places where I might have trouble getting to a bathroom quickly."  The day after that, someone declares they're going to work on getting into shape.  Sounds great but..."Sorry, I can't do crunches or sit-ups without  hurting or possibly soiling myself."

After a while, all these things became a list of verboten activities.  I couldn't go here, do that.  Not just that day, but ever.  I had two $65 tickets to see Kenny Chesney in my hand back in 2005.  I bought the tickets around the time I was diagnosed.  I was under the impression that with medication I could expect a most normal daily life.  Wrong.  The day of the concert, I felt terrible so I sold the tickets to a young woman living in the apartment building above us.  I've been afraid to buy a ticket to anything else since.
I can't go see you in concert. Or go to the beach. I hate you, Kenny Chesney.
Living with a chronic disease requires adjustments.  You redefine your limits and expectations.  No one wants to admit it, but you also redefine your aspirations.  Once upon a time, you may have imagined climbing Mount Everest.  Now, an ambitious day for you might be to take a walk around the block.  Instead of Kenny Chesney concerts and Reds games, I had to settle for iTunes downloads and games on TV.  I came to resent these substitutions; I felt that I was a second-class citizen, not allowed to enjoy the good stuff anymore.  (You see how this is all cyclical, right?)

In these economic times, I'm sure many read this and think, "Big deal; I had to give those things up, too."  Two things.  Firstly, financial woes--as devastating as they can be--are more transient than health conditions.  Things will turn around eventually and you'll very likely be able to resume going to overpriced concerts and paying for $8 beers at ballgames.  Secondly, we need to start being honest about our materialistic society and how not being able to afford to partake in things can create the same sense of not being as good as other people.  We often discuss this in terms of not being grateful for what you have, etc. but the truth of the matter is that our society is driven by the very concept that being able to afford things is a sign of accomplishment--ergo an inability to afford things is a tacit sign of failure.

I don't know what the answer is to all of this.  I wish I did.  It's probably something as simple as, "Get used to it" but that's awfully trite and much harder to actually do than it is to say.  It seems as though that really means, "Get used to being a second-class citizen."  I surrendered to that in the last year and I now reject it.  I know I cannot expect to resume my pre-Crohn's life any time soon.  But that doesn't have to mean that I won't, can't or shouldn't have good days.  Neither should you.