“It’s not about you!” or being selfish when you’re chronically ill

Published February 19, 2013 by crazyinpink

I felt like screaming at him “Shut up! It’s not about you! You haven’t done anything. I don’t even care about what we’re talking about. I’m just sore! It’s nothing to do with you!!”

Moments like this, although not frequent, are familiar to those of us living with chronic pain and especially an invisible illness. Something changes inside you and you go from being normal to suddenly having pain or discomfort. If you’re in the middle of something, your whole demeanour changes.

I go quiet, I concentrate on even breathing and my posture ranges from hunched over to leaning back – anything to try and ease the pain.Ā  When this happened on Saturday, in the middle of a day of conference organising with Best Friend, he immediately thought he had done something wrong and went on the defensive.

It’s happened before and it’ll happen again. Best Friend isn’t the most confident person in the world and, in his socially awkward ways, assumes he is to blame for any slight change in my attitude or appearance.

Last year, during the most awkward weekend of my life, I cried in front of him while we stayed in a B&B in Ireland. For months he kept on about it, asking me to tell him what he had done wrong and why he had upset me. It was only in a surge of embarrassing boldness, I finally told him that I had an abscess that weekend which was causing me considerable pain and discomfort and I couldn’t have told him that when we were there.

Sometimes, I feel so helpless about what my body does without my permission. I could be fine, working away, smiling, spending time with friends and two seconds later, my insides are spasming and it feels like a rusty hook is dragging across my pelvis. There’s no big announcement or event that precipitates the change. There are no signs. It just happens. But the timing sucks sometimes.

So it happened on Saturday, while going through a budget for our conference, a cyst that I had only noticed the day before became so angry and determined to disrupt my relative peacefulness.

Best Friend and I have a weird kind of relationship, where we’re close enough to share everything but only at certain times. If I volunteer information, he usually recoils and feels awkward. I have to keep it until he asks, only then do I know he’s ready to handle it. And he does ask, eventually.Ā  He’s been so good during the last few weeks, phoning me every day, sending me cards. When I returned to the office for the first time on Friday, he spent all day hugging me and, for the first time ever, kissed me on the cheek. He was truly happy to see me.

Now that this cyst has reared its ugly infectious head, I know I’m more tired, more grumpy and less “me” than usual. My body is fighting an infection while its still recovering from having stuff scraped out of it.

I tried to tell him I was sick but, in his head, I’ve had an operation and so I should be better.

I know I’m being selfish but I just felt like yelling at him. His insecurities irritate me and I don’t really know why. He is only trying to help, he cares about me and wants to know what he has done to upset or annoy me. But, right now, its not about him. Its about me.

Ā 

Of course, even saying that makes me feel worse. 100% Bitch.

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13 comments on ““It’s not about you!” or being selfish when you’re chronically ill

  • I can relate so well to this post! I also suffer with chronic pain and often keep it to myself rather than complain about it all the time. I don’t have someone following me around trying to figure out what they did wrong (can clearly see how that could get annoying, no matter how it is intended).

    I just discovered your blog. šŸ™‚ Looking forward to reading more.

    • Thanks for commenting!
      I sometimes feel so selfish at times like this, what I want is for everyone to just read my mind and know exactly what I’m feeling and exactly how to make it better. Unfortunately, I don’t think that’s possible! šŸ™‚

  • I’m right there with you, honey. I am in full on bitch mode. I feel bad enough bitching at my husband, but I took it even farther this time and managed to bitch at my mother – boy, was that a mistake. Tonight we’re going to see a movie together. It’ll either be very healing or I’ll kill her. Or myself. Or both. Because ENDO, PAIN, HORMONES, BLARGH.

    UGH.
    Yes.

    • It actually makes me feel a little better to know I’m not the only moody irrational nutcase! How did your movie go??
      The stress of the weekend swung me from bitchy to weepy which is almost worse in such a male, non-emotional field like academia. It’s a whole other story though.
      *kicks stuff around office, collapses into weepy mess*

  • You are not being selfish.

    And I so relate to that thing that comes over our body when the pain hits. I go from being “on” to totally tuned out and quiet. People always think I’m mad at them or they did something wrong. I’m always trying to remind people “nope. I’m just coping and have nothing to give to a conversation right now.”

  • I was saying I can relate. When pain hits I just zone out and people think something is wrong. I’m always telling them I’m just in pain and have nothing to give to a conversation right now. Sorry you are suffering, but you are NOT being selfish.

    • Usually, I tend to put my happy face on, like a mask so people can’t tell. It’s only when I’m with those closest to me that I can let my guard down and just let my face reflect what I’m actually feeling.

      • Absolutely. Often when people find out I’m sick they are SHOCKED. I’m like “ya u can do my hair and makeup, throw a smile on my face and hide it well”. Until you know me…then you can just look in my eyes and tell how much pain I’m in.

        Thanks for commenting. You made my morning. šŸ™‚

  • just stumbled onto your blog and, even though this post is a bit old, just wanted to send an “I hear ya!” i find sometimes i can totally act like a “normal” person despite high pain, but other times i can barely function let alone be sociable. the invisibleness is an added issue. it’s quite the mess…..sometimes it is the pain and people can’t relate (like the Ex hating me being too tired to go out or people getting mad at cancelled plans)…other times it’s the opposite and people assume it is the pain or the meds and it actually IS the situation!

    • Hi Cheryl,
      Thanks for your comment. Ditto with trouble with an ex due to being too tired to go out!
      Its so frustrating at times when you just want people to know what’s wrong. I have learnt that sometimes I need to be selfish and take care of myself without worrying how others will react to it. I guess I’m relying on those around me to be supportive…which is very much easier said than done!! šŸ™‚

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