When guilt tries to kill your social life, fight back!

by Laurie Edwards

I was on the phone with my best friend a few months ago when she said something that really hit me: "I shouldn’t feel guilty for the things I can’t control, only the things I can." It sounded so simple, so logical. And of course it was much easier said than done.

If the problem is not guilt itself but misdirected guilt, then as someone with multiple chronic conditions I have an abundance of things I can use to berate myself. The list of things that are often beyond my control is lengthy: whether or not I will wake up and have a "good" breathing day, if that sore throat I had yesterday will turn into a full-blown viral infection, if the tenderness and fatigue I feel in my legs in the morning will mean I can barely walk by dinnertime.

Of course, those are merely the symptomatic causes for my guilt. Since I don’t live in a vacuum, these medical variables have a tangible effect on my relationships and the plans and decisions I must make to accommodate my conditions. It is when I have to cancel plans, rearrange commitments, or can’t follow through on something I said I’d do that I am consumed with guilt.

We all have that list of plans we've cancelled...

The list of plans I've cancelled - or plans I've "ruined," as I say when I am particularly harsh or self-pitying - is, naturally, as long as the list of medical problems that forced me to rearrange them in the first place. There was the trip to Ireland senior year in college I had to cancel because I had pneumonia, the trips to Connecticut for a friend's birthday I had to opt out of at the last minute two years in a row, the baptism of my friend's first baby I had to leave early, the bachelorette party I missed because I caught yet another infection.

And those are just the special events. They don't speak to the more average occurrences, like meeting a friend for coffee or having drinks with the girls, that I have to postpone.

And then there was exhaustion

I've always had trouble controlling the infections caused by my lung conditions - primary ciliary dyskinesia (PCD) and bronchiectasis - but recently I was also diagnosed with adrenal depletion. Since my body couldn’t produce adrenaline, I experienced episodes of extreme fatigue, muscle weakness, and difficulties regulating my heart rate.

Translation: I considered myself even less reliable than ever before.

During the first few months of my adrenal problems, I found myself backing out of plans far more than I actually made it to any of them. I think I spent five months' worth of weekend nights curled in a ball on my couch, too run down to even concentrate on the television shows my then-fiancé John watched with me.

Failed solution #1: Playing hermit

My solution? I stopped making plans altogether. If I had to hear myself say to one more person, "I am so sorry. I really want to go, I planned all week on it, but I'm just not up to it" one more time, I was going to scream. It was worse, I reasoned, to constantly have to call my friends and bail on our plans than it was to never have any plans. I figured by this point, my friends were starting to assume I wouldn't be able to come anyway and their invitations would begin to peter out as well.

I'd already gone through this cycle with John earlier in our relationship, apologizing over and over for the concerts we missed, the dinner reservations we set and never made it to, the weekend trips we booked and lost our money on when we had to cancel the day before.

Stop apologizing!

John didn't let that last long. "Would you please stop apologizing? You're driving me crazy! You have nothing to be sorry for, you're not feeling well and that's not your fault, so please stop saying you're sorry." After he said it a few times, I started to believe it. Sort of.

It was John who helped me see that there were better ways to deal with my inappropriate guilt than simply never seeing my friends. They had always been first-rate caregivers, visiting me in the hospital with trashy magazines and bright polish for my nails, offering to pick me up and drive me home so I could conserve energy, listening when I needed to vent my frustration. They had always been flexible when it came to changing our plans, and they always offered their help.

So why was I letting my own guilt override all the ways in which they'd already shown me they understood my situation? "You're not being fair to them if you just remove yourself," John told me. I realized that not only was I punishing myself for things that were not my fault; I was preemptively punishing them as well. They deserved a lot more credit than my niggling little fears over saying "I'm sorry" too many times.

Getting over the guilt trip...and getting social again

How did I finally get over this year-long guilt trip? I stopped setting myself up to fail. If I made plans with friends for a Saturday night, I made sure I didn’t have anything I needed to do Friday night or Saturday afternoon so I knew I'd have energy. I started being more realistic about how many work commitments I could take on each week and how those activities would impact my life outside of work.

Since I knew I was still going to have "bad" days no matter how much planning I did, I started inviting my friends to my house more often. I provide wine and cheese, and they provided much-needed company, and since the destination was my own living room, I knew that no matter how tired I was I'd be able to attend.

I still fight that initial impulse to feel guilty when things come up, but I am getting better. The unpredictability of chronic illness isn't ever going away, and I'm not going to spend the rest of life apologizing for it.

Laurie Edwards is a Boston-based writer. She teaches writing courses at Emerson College and recently completed her first book. Check out her blog, A Chronic Dose, for more on living with rare diseases. She also recently wrote for ChronicBabe about the importance of good first dates with doctors.

Posted: 4/21/2006 in Relationships | Also posted in: Coping

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