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

No one is responsible for their genes
Those living life apparently immune can equally drop dead tomorrow or become disabled. Focus on yourself and reach out for peer support.

i have 4 siblings and to be fair my parents were very fair with their gifting of the genetics.. not one of us has ALL the conditions my parents suffered from, but each of us has something.. the only thing we all shared was the age my mum passed away at.. she died at 46.. and each of us worried as we reached that age, and are thankful for every year we make it after that.

i don't feel bitter, it is what it is and is has to happen to someone, and i don't compare my woes to my siblings.

you get one chance at life.. use it wisely, if you spend your days mopping about and being miserable then you are wasting it. don't suffer from your condition, live with it and adapt it to make it suit you.

Absolutely nail on the head

Although I’ve heard many people say “Why me?”. I’ve never felt that way myself. Why not me, it has to be someone, why not me? It’s just the way it is, it’s here to stay & there’s nothing I can do about it.

It rankles that one sibling has never worked - healthy as a mule, just stayed on benefits

Never ever had a job

In their 40s now

Slags others off that works to pay her benefits

Will complain for an hour that a delivery driver woke her up at 2pm by knocking the door ...................This type of thing is what i had in mind when i said about people bleating - as to me, this isnt even worth the air it takes to mention it, nevermind do a full on 60 minute rant about it

Whereas I work full time and always have and trust me it is painful for me to do so. Often I am hooked up to a machine. Most of the time I am absolutely bollocksked

But I carry on. I guess I feel bitter about that

and, the absolute effort that goes in to being ill. The 25+ medications and protocols i need to do....and the non stop hospital visits and GP appointments that i end up spending a great deal of my hol days on

Anyway ill stop ranting now lol - thank you for listening x

im not sure what you are bitter about? is it the fact that you have an illness or the fact that your sibling does not.

do you think that you should be living on benefits becuase of your illness and that your sibling should be working because they are fit and healthy?

if it bothers you than much, stop work! if you are in so much pain every single day, then stop work! you have chosen to work.. and well done you, but don't bang on and on and on about how ill you are and how much pain you are in because people will get fed up of hearing about it.

no point being bitter.. its what it is.. deal with it.. life i'm afraid is not always fair

It's very little comfort I know but you'll have left a better mark on the world than your workshy sibling, they've closed their world down by choice, you have not. In your place I'd be angry, bloody angry, knowing my life would be cut short, there is nothing that can make that thought better.

I think it's absolutely ok for you to limit your exposure to people who make you feel worse or don't add anything to your life.

In terms of accessing counselling, some therapists offer reduced prices to people who are unable to otherwise afford it. Maybe look at the websites of some therapists in your area?

Harsh words.

OP, says she doesn't moan to people about it. She's come here to offload.

I always remind myself that so many people endure such terrible conditions. I'm fortunate, so far in life with my health.

All the best to you

I definitely need to look in to counselling, as it as I am definitely not doing myself any favors.

I don't talk to anyone at all IRL about this. It feels burdensome and not only that, I am still at Grade 1 (which I do feel fortunate about in itself) - and am still able to do some things and I do not want to become a mood hoover over the lunch table for example, it feels a sure fire way to lose friends

I am not always this depressive lol

I understand where you are coming from OP. I have not a genetic illness but surgical complications from multiple laparotomies which mean chronic pain and bowel obstructions, the worst is when people don't get it and say daft things like 'hasn't that healed by now' or 'my friend thought they had that but they thought positive and they opened her up and she was fine (!)

You're not seriously saying that you doubt whether OP is bitter about having a life-limiting condition, right?

oh god You know that is one of my pet peeves - like unrequested illness comparison lol i mean here on this thread - its different because it is our general topic - but in general topic of conversation
rubbish isnt it really it shows a lack of understanding but i guess people are lucky if they dont understand really

It is really hard for me not to feel bitter when there are 90 year olds can do more than me

You poor thing. When my twin sons died at birth last year. I nearly lost my mind when my sil whose baby was born healthy the same week complained endlessly about their colds, how hard having kids was.

However I realised this was their life and not my problem, even though I knew had I'd been blessed with two living children I'd make the most of it.

My only concern for you, is you. I'm saddened that this has taken up so much of your heads pace. You deserve absolute peace and although I can't possibly understand what you are feeling, I know how this stuff can dig deep. Just want you to know you are so brave and as others say get onto the NHS and see what you are entitled to. You deserve it xxx oh and rant away. It helps😅

I have a life-limiting illness too so I do understand the unfairness and anger etc. But don't resent your siblings for being able to have a healthy life. For a start, you might outlive them. You never know what's around the corner.

You are wasting the time you have by allowing these intrusive thoughts into your head. I agree you need some support from a councillor therapist

I have one teen with EDS and POTS, and another with a learning disability. There are days when I see them struggle, how much tougher ordinary life is for them. There have been times I’ve raged at the unfairness of it, and times a good dose of gallows humour has saved us. On top of this they’re somewhat invisible disabilities that I’m forever having to explain to people. Thinking of you, and all the others out there with the extra load 💐

Your sibling seems to have a sad life if she sleeps on till 2 pm. She might not have your condition but she does not sound well and happy

"Clinical health psychology" isn't a support group. It's clinical psychologists who specialise in helping people to cope and live as well as they can with difficult health conditions.

Completely understand why you wouldn't find a support group helpful.

If you're in England you should have a local clinical health psychology service that you can be referred to via NHS. Ask your hospital team or GP.

@Ella31 you are a far better person than me if you didn't take your SIL to task, that was incredibly thoughtless of her. I'm sorry for your loss

Aw no, I'm not. I was really angry and bitter but I let it fester. With the help of friends and family I managed to look past it. I'm 9 weeks now with my rainbow but I've got two very special angels on each shoulder guiding me🥰

We have the familial form of MND in our family. We didn’t know it was the inherited type (20% of cases are inherited) until after I’d had my children.
Right now I haven’t had the test so I have no idea if I carry the gene and my mum won’t have the test so it’s either 0% or 50% risk depending on whether she has it.
I’m pretty pragmatic about it regards myself but I struggle with the fact I have potentially passed on something so awful to my children.

Do you think that pushing through, and working is helping you though?

I have epilepsy, Multiple Sclerosis and COL4A1.

The COL4A1 is passed down to me by my mother. I have also passed it down to my 2 sons. My sisters don't have it. I've just had a stroke caused by it.

Nar I don't feel anyway about it. It's what life is. We are all going to die anyway. Two centurys on no one will remember us anyway.