Feelings

Out of everything i try and talk about my feelings are the most difficult thing to open up about.

I am not someone who tends to wear their heart on their sleeve or want to discuss things when i am upset. I am more the person who tends to go more introverted and doesn't like to show emotion. This is particularly real in all aspects of my life including where CF is concerned.

Whether I am like that because i learnt from a young age that there were more important issues in our home than the way i was feeling i am genuinely not sure. But i am an incredibly private person maybe that is just who I am.

But if I am going to be truly honest with everyone I will open up my thoughts about things over the years, mainly to show you it is normal to feel that way and you are not on your own.

As a child you feel a certain way because you do not understand fully what is going on around you it is only as you get older you can reflect and process things differently, because you are looking through a different lens.

Hats was always a little sod, her nickname at home was angelica (of rugrats) i always felt she got away with murder! It wasn't fair, she got everything and anything she wanted. I suppose in someways my parents maybe over compensated because of their guilt because they were the ones who passed the defective genes onto her. But i also think this feeling of resentment is a normal part of growing up with siblings, you always think the other is the favourite and always get's their own way. One thing we still laugh about now is, dad used to always say to her, you can do whatever you want as long as you're happy....... however hats always took that literally, and tell the teachers that and occasionally throw it into an argument! She's nearly 30 and still throws that in as her defence!

When i think about how annoyed i felt that she got away with so much, in some ways i felt quite guilty. Guilty of how i genuinely felt about things, what sort of person would feel resentment towards their sister when they were going through so much? As a child though you do not think of it in that way, you just see it as a normal sibling rivalry CF did not come into it from my perspective but it did from my parents and that now i understand.

Now all i feel is guilt, guilt because of what she goes through everyday and i don't. I get up in a morning (at some point) get ready and do what i need to do, She has to plan everything, it is all about routine with her and how to stay well. I could do any job i decided i wanted to do, she couldn't her illness would mean she has to take time out of work, certain roles could make her more poorly and susceptible to infections. I feel unwell it means i just need to slow down a little bit and make better lifestyle choices and take some vitamins and maybe occasionally a course of antibiotics, if she becomes unwell it generally means she will need a course of IV antibiotics or a hospital admission and there is nothing i can do to help or make her feel better other than visiting.

All she has wanted for her life is to be healthy, settle down and have children, she would make the perfect mum ( i personally couldn't think of anything worse) but instead she has had several operations, including gynae procedures and has started to go through IVF which up to now has not been successful. She has been dealt a rubbish set of cards, but it doesn't stop her having her hopes and dreams and planning her future.

She is genuinely one of the most inspiring people i know (don't tell her) she is a woman with CF, she is not CF, her disease does not define who she is, it is just a part of her what makes her unique, she has faced so many challenges and obstacles already in her life she just finds a way of getting round them and sometimes we do it together.

She doesn't know i feel this way nor will I ever tell her, I do not think I am the only person who has been brought up in a household where their sibling needs more attention due to disease or a disability. What I want you all to know is it is normal to feel this way, you do not have to hide it or feel guilty or think you are a bad person because you are not you are just dealing with illness in your own way.

Whilst reading online about some of the issues I had growing up and now into adulthood this article might be useful to have a read. It is an American site and somethings are not relevant in the UK, but it also highlights the way we feel is normal behaviour.

https://www.psychiatryadvisor.com/home/topics/child-adolescent-psychiatry/emotional-problems-facing-siblings-of-children-with-disabilities/