Cystic Fibrosis, Self

Self Esteem and Advocacy

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I often believe that every one secretly hates me.

It happens when I take Joseph to nursery and I have to speak to one of the nursery staff. I have a ball of anxiety in my stomach because I believe they are all sneering at me behind my back or just waiting to whisper about me after I’ve left.

“Who does she think she is?”

When I have friends over, after they have left I go over and over in my head what I’ve said and analyse it, highlighting every glance and hand gesture thinking,

“was he rolling his eyes at me?”

“I bet she thinks I’m stupid”

“They can’t possibly have a good time with me, they’re just pretending to like me out of pity.”

Even when I go to the check out at the supermarket I think the cashier HATES me.

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I’m often terrified to ask anyone to help me. I don’t feel like I am worthy of other people’s time or effort. I don’t like talking on the phone because I feel like my voice sounds weird and I don’t come across well.

And don’t even get me started on party’s and family gatherings.

I even sometimes think my husband secretly hates me.

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Now all this mental paranoia and self hatred can get pretty exhausting and to be honest really annoying. As if all these people are wondering around constantly thinking about me and how terrible of a person I am.

That is not happening. They are thinking about what they are going to have for tea, or whether their bum looks big in those trousers or even “Everybody hates me! That woman she’s looking at me weird, she thinks I’m stupid”

I am probably the only person who is going around constantly thinking how terrible I am.

And all this self hatred is becoming a real issue. Not only does it affect small things like what I wear everyday (for example I wore a head scarf today to drop Joe off at nursery because I hadn’t had chance to wash my hair, and the agony of wearing it outside in front of people with EYES who could see ME with something on my HEAD oh the HORROR!!!!! Where did I get off thinking I could wear something on my head?! I must look ridiculous! All these people are staring at me thinking about my head! AHHHHRRRRGGHHH!!!!! I managed my 10 minute sojourn out of the house, most of which was in the car where I couldn’t be seen, without internal combustion but it was close.) But it also affects big things like relationships and making friends, feeling happy and content with my life choices, being able to do important tasks like making phone calls to order medicine for Joe and especially being able to advocate for my disabled child.

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When you have a child with disability’s and additional needs you need to speak to a lot of people. You need to be able to talk on the phone, you need to be able to explain your child’s medical needs, you have to fight for a lot of things on your child’s behalf. This becomes very difficult to do effectively if you are constantly thinking that you are not worth listening to, that everyone hates you , that you can’t achieve anything, that you are not enough.

But the problem is I have to be enough.

There is no one else out there who is going to advocate for my child. There is one else out there to go to hospital and psychology appointments and explain what his health is like and his issues are. There is no one else out there to explain to teachers and nursery staff and SENCO workers and school nurses and catering staff about his conditions and needs and medications. There is no one else out there to argue with chemists and medicine management boards about his prescription on his behalf EVEN if they do think that medication’s too expensive. There is no one else out there applying and reapplying and reapplying for disability benefits that the government don’t want to give him. There is no one else sitting with him day in day out doing his physio and medications and encouraging him to eat for hours and cleaning up his sick in the middle of the night. (other than Rob of course, he does this too). There is no one else.

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So I’ve got to be good enough.

And the only way I can be good enough is to start realising that I already am good enough. That, sure, not everyone is going to like me, and I’m not perfect but no body in this whole world is liked by everybody. NO ONE.

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And is that the soul purpose of my life anyway? To be liked by people? To not be hated by the random person walking past me in the supermarket? To be tolerated, to be fine, to be normal?

No. As cliché as it sounds it doesn’t really matter what other people think if I am doing what I believe is right and I am going about it in a way that doesn’t do unnecessary harm to others.

So I’ve decided, I need to work on this self esteem thing. I need to start liking who I am, who I really am deep down warts and all, and stop letting paranoid thoughts rule my life!

Now, where the hell do I start?!

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