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.

14 comments:

  1. I won't go into the specifics of the whys and the hows because there's too much to say, but I would like to let you know that I really find these posts you write about Crohn's and depression enlightening. I imagine they are hard to write at times. I want you to know that your efforts are appreciated. Thank you.

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  2. Thank you for the kind words of encouragement, Emil. Any time you want to elaborate, I'll be happy to read what you have to say.

    Sometimes these posts are difficult to write, but I find them fairly cathartic and any time I receive feedback like yours, I know they're worth writing.

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  3. You nail it, I think, Travis! I can't really "own" the Crohns situations, but I absolutely can identify with your points on depression. I always look forward to and then enjoy your writing.

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  4. Anytime I hear someone who shares my woes tell me I've "nail[ed] it," I know I must be doing something right. Thank you for the encouraging words, Brenda. I always look forward to your praise! ;-)

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  5. Your words are honest and right on, from someone who deals with both chronic depression and Crohns. You are an inspiration with your transparency and vulnerability, putting voice to much that others do not. Keep on blogging!

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  6. Well once again I must say, you did nail this one. I think i am at a point where i can enjoy the good days. Also maybe even looking to date again. Thanks again Travis for sharing and being able to put into words what most cannot or at least I can't

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  7. I'm glad to hear you're letting yourself enjoy the good days, Larry. And it's terrific to hear you think you're up to the cutthroat world of dating! Just be careful...there are a lot of people out there to be avoided (for various reasons!).

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  8. You humble me. It's funny, but I never really even thought of myself or this blog as "transparent," though because I've put my name to it obviously I'm out in the open. I decided years ago that if I wasn't comfortable putting my own name to something I put on the Internet, then I had no business putting that content out there in the first place. That approach was inspired by a comment I heard from Aaron Tippin, who explained that he didn't play bars anymore because if he couldn't take his young son to one of his shows, then he didn't need to perform there.

    I will certainly continue blogging, Anonymous, and it's doubly rewarding to know that someone is reading and taking away something helpful from my posts. Thank you for taking the time to read and to say such nice things.

    (Sorry it took so long for your comment to go through; there was some kind of sync problem with Disqus!)

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  9. Larry L Longhofer11/04/2011 4:12 AM

    Sadly yes I know, but my views are more if you want this old fart you have to chase it!

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  10. Reading all these stories about your condition and situation make me a bit afraid of saying something insensitive. I haven't yet had any condition that required much by the way of compromise, and I don't think I've ever been depressed to any extent. And it's so easy for me to imagine that any suggestion might come across as out-of-touch and perhaps privileged.

    I can somewhat sympathise from the perspective of Anna's Chronic Fatigue, but even there I'm sure I sometimes lose part of my grasp of the meaning of the condition unless I concentrate.

    I just hope that you haven't been denying yourself any temporary relief or ancillary remedies that might be available as a result of the belief it's better to be completely sick than having okay days. I know sometimes Anna has trouble accepting that doing/taking something that doesn't help the condition but makes her feel better for a while is warranted. I never suggest these things to her in the false hope that they will somehow fix her, but some days when she's not her best, I just try to goad her any way I can to take the "easy way" for a well-deserved good day.

    I'm sure that didn't come out anywhere near as eloquent as it is sitting here in my brain, but I hope the gist came through ;)

    - Arthur

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  11. No worries about any insensitivity! As for enjoying the little things, I've found it's been easy to remember that with the Crohn's...but hard to remember about depression. That is to say, when the depression was under control, I did take pleasure in the little things. With the depression, though, there was no real joy in anything. Lately, I've taken pleasure in using my blog to connect with people about these health conditions and the feedback has been humbling and gratifying. That, in turn, has helped assuage the depression. Win-win!

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  12. I just stumbled on your post and though I usually seldom tend to leave comments on the web or blogs, I would like to take the time to say this: your candid writing about this is most likely very helpful to quite a few people, and is otherwise also rather excellent (stylistically etc).
    I don't have depression but I do have Crohn's, and for about a year and a half I felt pretty much like you described it above; now though, with the right treatment, I feel great (physically, and emotionally most of the time as well) - if I ignore the occasional flare-up - and though every instance of Crohn's is of course quite its own beast (I'm probably 'blessed' with a fairly benign one), I would just like to say that some day the default really can be improved, even when you never expected it would.

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  13. Thank you for reading, and for taking the time to leave this comment, Derek. I'm glad to hear that you're managing well right now and I hope that continues. You're welcome to peruse the rest of this blog; there are numerous Crohn's-related posts and I'm certain there will be more in the near future.

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