The very worst part of being chronically ill, is the guilt.

No really, I’m not kidding. Worse than; in no particular order,

the pain,

the tiredness,

the diarrhoea,

the bleeding,

the constant low-grade headache,

the skin lesions,

or even having to deal with tin-god junior doctors.

Seriously, worse than any of that is living with the guilt. But what do I mean by “the guilt”? Well that’s going to take a bit of explaining.

The average person can do pretty much what they want to do. Want to see a movie with a friend? No problem, “Which movie, and what time?”

Tell their partner not to worry about the housework, that it’ll all be done when they get home; yup, got that covered.

Or how about wanting to go to bed with a lover, going all out with the flirtation, the foreplay, the making them feel like they’re standing at the centre of a sexual whirlwind; then having to stop because you’ve run completely out of energy, or because your body has decided that this is exactly the right moment to need to throw up?

My own life is a huge list of cancelled plans, lost connections, and missed opportunities. I can’t begin to count how many times I’ve gotten ready to go somewhere, only to have to cancel at literally the last-minute. Or how many times I’ve missed events that I was really excited about attending; many burlesque events, artistic events, movies. Hell not that long ago I had to miss one of my favourite singers, Voltaire, because my body decided that it really needed 4 straight days of bleeding from my bowel.

In essence, I am an involuntary flake. Totally unreliable where any social life outside of my own home is concerned. To be able to do something as minor as go do the weekly grocery shop I rely on medicating my body to a point where I will “probably” get a few hours of not needing to be within ten feet of a toilet. Note the “probably”, the quotation marks are there because about 1 time in 10 it doesn’t work, with sometimes rather cataclysmic results for my underwear.

Now, you’re probably thinking that this should all lead to my feeling sorry for myself. But it doesn’t, or at least it only does very rarely. I’m used to not being able to plan with any certainty. The best I can ever promise is “maybe”, or very occasionally, “probably”; I’m used to being like that. I’m used to never being able to even think “definitely”. Definitely simply doesn’t exist in my life, and I’m used to it, I’ve had to grow used to it.

But what I’ve never grown used to is the guilt that goes with constantly letting other people down. For example, I quite simply can not remember the last time I went out for a night with my Partner-in-Crime. No memory at all, it’s been that long. And I feel terrible about it. I know she loves a good night out. I know she would love to have one with me, but…

See, there’s always that but. Even if we manage to make it out the door, odds are I’ll need to come home very early when my bowel starts to voice its disinterest in staying away from its porcelain best friend.

The same goes with friends. Over and over I arrange things with friends, only to have to cancel at the 11th hour because I simply can’t leave the house any longer.

So, boom, guilt for letting them down. For cancelling plans and leaving them in the lurch.

Then of course there’s the other sides to the guilt. The the side triggered by the worry you cause people you love. Or the aspect of it caused by not being able to pull your own weight. Or the guilt that strikes when you realise that you’re just a bad girlfriend, a bad friend, a bad lover, daughter…the list goes on and on.

And all this means that you say “I’m sorry” waaaaaay too much. So you find yourself feeling guilty for being sorry.

Yeah, being ill is rotten, but feeling unending waves of guilt is worse. Now if you’ll excuse me, the toilet is calling my haemorrhoids, by name.

3 Comments to “The very worst part of being chronically ill, is the guilt.”

  1. You’ve got it spot on- I’ve been through a lot of what you’re going through now and the guilt was always the thing with me too… Either that or being over-grateful. After many years of operations, drugs, dietary advice and dying three times, things are working better for me now…but even so, that guilt for not being as functional as a ‘normal’ person is still with me.
    I think at some point you just have to let go of things that you can’t control and relish the good times more when you have them.
    Your words really touched me. I don’t usually open up like this but I just wanted to say thank you.
    I send you my very best wishes.

    • At the moment I’m taking a very long break from writing, and most of my other creative works because of a really bad period of physical and mental health. And in truth it’s the latter that’s getting to me the most. I thought I had guilt before, but it was nothing in comparison to the guilt I’m walking around with because of my PTSD. And as you said it’s almost purely because of not being a “normal person”.

      I still haven’t reached the point of being able to let go. Probably because that’s the step after I come to terms with everything else. But it’s the goal at the end of all of this.

      I’m glad you enjoyed the post. It was pretty hard for me to write, and it’s wonderful to know that it was worth reading to someone else.

      • I’ve often found that sharing your burdens with others is a good way of letting go from internalising everything so that it all becomes so intense. I wouldn’t wish that upon my loved ones though and have always turned to strangers or professionals or have hidden behind anonimity…
        I truly hope that things start to improve for you- judging from your blog, you have a lot to offer the world.

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