Bitterness cos I pulled the genetic illness short straw?

[OutVileJelly1]

I try not to, but I really do feel bitter and angry, and very very scared.

I have a genetic progressive illness that has ravaged some of my family. The members who have this issue often do not see their 50s - with the illness destroying decades before this - so quality of life from mid 20s onwards is progressively worse until housebound etc

Anyway.. Out of my siblings I am the only one who has this. The others managed to dog the genetic bollocks and literally waste their opportunities as they sit around bleating about self created drama.

I see friends doing active things like going on walking holidays etc

I feel bitter. Like where is the fairness in this?
I don't expect an answer to the fairness question - I mean I know better than many that life is NOT fair in any shape or form but what irks me is that a lot of people who are perfectly healthy until late age literally do not appreciate it and sit around bleating about things that are actually minor issues

I am sorry for the rant. Has anyone else had something like this?

How did you get over this bitter irrational feeling

I am scared my husband will be a widow decades before he retires. My kids although grown up, yknow the regular stuff a person may worry about

I feel bitter he will go to live on and i will be long gone. In another ten years i wont be here

I cant talk to anyone about this. I know i shouldn't offload on here but i feel if i dont i will implode or something

I think i need counselling but i cannot afford this

Please don't refer to Autism as a defective gene! Even as a joke!

I have lung disease. I'm pretty young.

I also have a sibling who takes drugs and Has a terrible attitude so I get where you are coming from.

I can't completely relate and therefore won't try to but these are some things I've found.

There is always someone worse than you. It sounds really morbid and horrible to take comfort in this but it's more about perspective. When my DB was sectioned I went to a support group where I met a sibling whose brother tried to take an overdose but failed and had to have their limbs amputated. Most of the people there had siblings who had been sectioned many times whereas my DB had not gone back in. So it put things in perspective.

It sounds corny but focus on what you can do. As long as you can breathe and blink you can do something so turn things into goals and workarounds and be really proud of you.

Refocus your priorities. Cut out shit that doesn't not serve you.

I am.never without side effects of medication and I remember thinking well I could just stop. I let myself have that thought pattern and eventually realised it would get worse and I don't want to be a burden so I will carry on taking it. It was good to remind myself that I have a choice though.

I think you get to communicate to people how you want them to treat you. I don't want to be treated differently and I will ask for anything I need. That's always been my philosophy. I would like people occasionally to ask how the condition is so I think maybe I need to communicate this. Not often but maybe every few months or so.

Are you on ambulatory oxygen OP?

Hugs to you op and the others on this thread

I get this - oh I'm sure so and so had that.

Erm unlikely as you can probably count us on one hand per million people.

Or people who've smoked and say they are probably worse than me.

I find support groups quite helpful but the ones I attend are split by age range. I think that's probably quite important for a progressive illness. Especially when you are earlier on or newly diagnosed. I am on the cusp of two age groups although moving more into the second now. What is helpful is just talking and listening and the realisation of how it affects me day to day because you hear other people articulating it. It's hard to have a gauge of what's normal when you only know your reality so hearing other people have common experiences sort of validates me. Like I'll be kinder to myself because I will remember that it's a lot.

We are all made up of different desires and impulses- the important thing is to experience the full range of these but that can be achieved in multiple ways.

I understand entirely. My gran and dad died at 60 and just under 60 respectively. They were salt of the earth people who would help anyone and noone had a bad word to say against either of them. They both suffered painful upsetting deaths.

My grandsd on the other hand was a proper see you next Tuesday for his entire life died at 88 with everyone outside the family thinking how lovely he was and everyone in the family hating his guts and knowing the real him. He'd do nothing for anyone but himself and expected the world and, strangely, he got it. If they could have swapped the world would be entirely better for it. I get the bitter and the anger.

Im a carer and have lost all resemblance of a normal life. The person I care for actively wants to give up her independence and have everything done for her. It's infuriating.

Wishing you and the op all the love and support in the world.

I get you, OP.

It's natural to feel the way you do, but on the other hand, whining about trivialities is just human nature. No matter how good people have it, there will always be something that they want to change.

I can’t really relate as I have been lucky enough to be healthy so far. I hope I make the most of it and appreciate it. I do think you’re perfectly emotionally feel how you do. Too many people can’t see how lucky they are until it’s too late.
I do worry about this for my DD. She is surrounded by a whole family who have all been lucky with long and healthy lives. She has -epilepsy, asthma, awful hayfever and I’m starting to suspect an issue with her joints also ☹️. She is so positive through the difficult bits. I’ve been so impressed.

💐💐💐

Thank you everyone for your comments - it does help to talk (even on here- it really does)
Today will be a more positive day I can feel it already xx

Mate you are completely entitled to feel furious - I would too

To be honest no one knows what fate is around the corner. Life is a journey for everyone and if you're young and healthy people don't think about what it's like to be ill and that is also a coping mechanism.

There is nothing you and your siblings can do about it so pointless being angry. Can you channel your frustration into something that benefits you or reframe it.

I only say this as someone who has suffered mental illness and has seen the devastating effect thoughts have had on my physical health. It really is important to try and look after the mind.

I knew today would be more positive - I have found a counsellor local to me and am talks with her to have a face to face meeting

Thanks again all

I went through a stage of feeling angry and bitter. I had to let myself feel those unpleasant emotions to get it out of my system. Give yourself permission to feel them but then to let go.
I eventually was fed up of wasting my limited energy of feeling negative. I have fleeting moments but mostly, I see every day as a new opportunity. I am happier than I’ve ever been although my body is sicker than it’s ever been.

I really benefitted from a clinical psychologist who has an expertise in chronic health conditions. She worked so well with me over the course of around 8 sessions. I was initially skeptical but looking back, it really helped turn my life around.

It is hard. It is shit. It is unfair. Somehow we find a way to keep going. We are strong, resilient and capable. Don’t forget to tell yourself that every day. 😉

I know how you feel op. I’m 35 and have breast cancer. Once I’ve finished chemo I need to be on some hormone control drugs for at least 10 years which have high risk of osteoporosis and heart issues. In addition to risks like fatigue etc. I’ve also found out I’ve got a gene fault which means my odds of other cancers like pancreatic and obviously recurrence of breast cancer look more likely than the average person.

Because the cancer won’t kill me everyone keeps saying how it will all be behind me soon and I don’t want to give the well meaning person a lecture on all my future potential problems but like I said, I feel like my future looks bleak and it feels very unfair.

That's great! I really hope it helps.

I’m really sorry 😞

@aodirjjd
So sorry you have those worries.

💐💐💐