People who make my illness about them

I have to call someone close to me, and I don’t want to. Because I know the conversation will bring me down.  Why?  Because she makes my illness about her.

Huh?  How in the world?

This.

For a long time I didn’t let on how severe my illness was. I kept it private, hidden.  Eventually, with people to whom you are related, you can’t hide it. You are expected to attend events, and you can’t.  Or you show up and you are so clearly in terrible shape that you have to spill.

And now, lately, this person calls every other day to ask how I am.

I am the same.  Nothing has changed.  No, I am not better.  And no, I don’t want to talk about it every day!  I do my best to put it OUT of my mind, and these calls make me sit down and waste an hour of my day on a very negative conversation.

And it’s not even about me. Its ‘Oh it’s so terrible.  What can I do? I feel so terrible’

‘I feel so useless. ‘

‘I am so upset that you’re sick all the time.  It’s not fair’

‘I had to tell Xxxxxx about how sick you are.  I just couldn’t stand it. I needed to talk about it, needed some support.’

Do you see all those ‘I’ statements?

My illness is has become their tragedy.  They have taken it and owned it and now they are living it.  Which doesn’t help me, one iota, because as I said, I do my best NOT to think about it all day long. NOT to dwell on it.  NOT to focus on what I can’t do, but on what I can (not very much right now, admittedly).  And NOT to expect to be better tomorrow, or the next day, or next month. Because I won’t be. And that’s my life and I will make the best of it, rather than feeling sorry for myself.

And being forced to talk about my current situation every other day only brings me down.  I just say ‘I am the same.  There is nothing you can do, there is nothing anyone can do. I’m doing my best and trying not to dwell on it!’

And on it goes.  But it’s not about me, it’s about her.  How me being sick makes her feel.

And then I wind up comforting and reassuring her!

Really, and most crappily, nuts!!!

I used to have friends who made me feel horribly guilty about being sick.

‘Oh you’re sick again?’

‘Oh you can’t take Jason this afternoon?  Well I took Kelly AND Tim last week you know…it’s your turn.’

‘Why don’t you just try?’

I finally ditched those friends and decided no friends was better.

My ex-husband used to call in sick and tell his work I was very ill and he needed to take care of me, which is great. Except he did that on days when I didn’t need him.  He just wanted a day off. I was his excuse. His ‘sickie’ reason.  Then of course when I DID need him, he’d just had a day off, and couldn’t stay home to help.

All about him.

So I’d have to ask for help from those friends, who would demand their pound of flesh in return.

Cynical much now? Yep.  Trust issues?  You betcha.  Have trouble asking for help?  Natch.

But what all these people had in common was they made my illness their tragedy.  All they ever thought about was how my illness affected them.  And it was usually shallow bullshit like they wouldn’t have anyone to go shopping with and tell them if their bum looked big in those pants they really wanted.  The big issues.

I am not someone else’s excuse for being miserable. I am not someone else’s tragedy.

And it is NOT my job to sit on the phone for an hour and make someone else feel better about me being ill.

I don’t have the energy.  Right now we’re in survival mode. Both my children are off school for separate and serious reasons.  I have two schools to deal with.  I am in limbo until I know what’s happening with my liver and my lungs…until I know what’s happening, I can’t go back on any  medications.  And life without any serious DMARDS or BDMARDS is very unpleasant.

Xeljanz was helping.  I was still in a lot of pain, but I could walk. And some days I could work out. Now I am on the couch, have a swell time, and here I will stay.

The pain and disability I am experiencing is severe.  I am dropping the ball everywhere because pain affects your cognitive abilities and people are actually getting pissed off at me!  Seriously.  My OT is angry because I haven’t come in to pick up the wheelchair she has arranged for me to hire.

I get it, she’s doing me a huge favour hiring me a powerchair.  That’s very good of her.  But she needs to understand I am too sick to get there!  I need to book a wheelchair taxi to take me to the hospital, get the chair, and taxi it back home.  It will cost me a chunk of cash.  It will cost me energy.  And I am too sick for the damn powerchair to be of any use now anyway!  And of all people, she knows the state of my health and she should understand the impact. Instead she is just another person who is adding to the pressure on me, under the guise of ‘helping’.

And the ‘friend’ whom I tried to talk to, who instead spent an hour telling me her troubles, well she’s the archetype. We all have that friend. Their problems are always bigger, because they are rude enough to just talk over the top of anyone else, and ignore what is said to them.

Noise.  These people are just added noise in my pain-induced hypersensitive world.  I need some silence.  Peace.

I have very limited energy. I have to have a razor-sharp focus on the things that need doing. That means looking after my kids, and getting them healthy and happy. And sorting out my liver so that I can restart medication.   That’s all I can cope with. Those are the priorities.  Even breathing is difficult right now.  That’s where I’m at. That’s where I’ll be until I can start meds again, plus at least two weeks for them to start working.

Unless you can make that process happen faster, you can’t help.

And unless you are willing to LISTEN as well, I don’t have time to hear you talk.