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

I'm the only one in my immediate family who has Diabetes, had it since I was 3, no one else, just me, years and years of needles, blood tests, then added complications of getting pregnant and being pregnant, having to watch what I eat, activities I do etc etc. But there's nothing I can do about it, except look after myself. i
It's no ones fault I'm Diabetic, just my shit body, I can't blame anyone, and feeling bitter about any other siblings wouldn't make me feel better mentally anyway. I'm glad they haven't had to go through what I've gone through, and will continue to do, it's horrible.

Completely understandable to be royally fucked off with the world!
Have you sought any form of counselling via the NHS? Is there a support group for people with your condition?

It's not irrational at all, but could eat you up if you're not careful. I'd be spending my time/energy on the people I truly love

Sending love and hugs

Is there a local peer-support group for your condition? What about IAPT? They offer free counselling for people with chronic conditions. The waiting lists are long but the sooner you get on, the sooner you will be seen.

I'm the only one in my family who has EDS, pots and other progressive illnesses and two disabled children one with a learning disability & one with type one diabetes.

Yes I get very angry at DHs sisters who are perfectly healthy and healthy kids and piss it all up the wall on stupid drama.

It's completely understandable; our circumstances seem similar. It is difficult to not feel bitter when you are acutely aware your future will not be as perfect as others.

I've taken the view that you make the most of what you have in the present with who you care about the most.

Completely understand and am in a very similar situation. A rare genetic visual impairment runs through my Dad's line. Of 12 cousins I am the only one who has it. My vision has been declining since I was 12 and I have severely impaired sight now and I know I will lose my sight completely soon. There is no cure known as of now.

I spent my 20s raging at the unfairness and feeling bitter. Acceptance came slowly and what I have realised is not to compare my life or worry about.my life mirroring rhat of my Dad or his siblings. I may not be able to ever regain/improve my sight but technological advancements mean I still lead a full life. A different life but what I would have liked yes, but isn't that life?

Once I let go if the fear, I was able to deal with the present. DH and I made a bucket list of places I wanted to visit while I could still see and we have made a huge dent in that list.

My 25-year-old daughter died of a very rare genetic condition. I am not sure this will help, you but she was generally happy, and made the most of her life, knowing she would die. We talked about this a lot.

One visitor asked her how she was so happy when she was suffering, and she said - what's the alternative - being sad and bitter all the time? She made a conscious decision to be happy every day. I know this won't work for everyone, but a shorter happy life is better than a long, bitter one.

I don't have anything like this (that I am aware of anyway) but I would be surprised if you didn't feel a bit bitter at how things have turned out. My only advice would be that it would be a shame to spend the life you do have being bitter, so is there any support services etc that you could access, to help you deal with your not unreasonable feelings but also not let it consume you? Best of luck.

I get it, my son was really ill when born and was very lucky to survive. It pissed me off that so many people appeared to moan about trivial shit. But the only way I got through it was to remember that it was me dealing with this hell and not them, and I don't expect them to understand.

Same here OP, I'm currently suffering from Familial hypercholesterolemia and I feel so sad😟 My whole family has been ravaged by it, I've lost my sister recently due to high cholesterol! I've also passed on my defective autistic gene to my children.

I can relate on a certain level. I've been ill all my life and my only child is severely disabled. I was very bitter for years. Now I try to appreciate the simple things in life and remember that those people who haven't suffered the same way won't live their lives as fully as I do.

Can you think of how you'd like to spend the next ten years? Things you'd love to do and places to visit?

I'm sorry you have this and I do understand a little. I don't have an illness, but when I lost my son I found it hard to empathise with people crying about losing their children to university, especially when their children were babies! It felt that they were getting things so out of proportion! But people's emotions don't work that way, and they feel, and react, the way they do and not the way you with your different experience would.

Is there a charity that supports people with your illness, or a similar one? You may be able to get counseling through them, or at least some emotional support, if you can find one.

I have a medically unexplained illness that impacts my life a lot and I am very bitter and angry about it.

My local steps to wellbeing mental health services is treating me with some CBT to try to cope with this. Apparently it’s a new thing and I only had to wait a month to start. They seem to be trying to help people living with illness. I have only had the 1st introductory session so it’s early days for me.

I self referred and hopefully this will help. It may be worth seeing if you can access this in your area.

I can understand feeling bitter about life being unfair. I feel bitter that my lovely dh died at 47. He was a brilliant dad and husband. Yet my mum was abusive and she gets to still be fit and healthy at 81, but expects help. If I had my way they'd have had each other's life spans. Yes I'm bitter.

FH - That is one of the issues I have, along with two progressive lung diseases that both work in different ways to make it impossible to breathe

Im so sorry about your sister
.

absolutely understandable x

What country are you in? Assuming GB then...

NHS hospitals should have connections to a clinical health psychology service specifically to support people in circumstances like yours. If you don't have a hospital team, your GP should still be able to refer you to your local clinical health psychology service.

Alternatively everyone can self-refer to general wellbeing services / IAPT. Some GPs now will have their own mental health nurses or counselling too.

You can also talk to Samaritans any time if you need to offload your feelings to someone who doesn't know you and won't judge you. It's not just for people feeling suicidal. 116 123.

What's happening to you is unfair and your feelings are valid. You deserve support to process and manage them so you aren't eaten up by them with the life that you do have.

Totally understand you being bitter although I can't relate (luckily for me). I think you need to find a way to distinguish between your anger at what's happening and anger at your family and friends. Before you were sick everything you said wasnt just self indulgent 'bleating'. It was just you living your life.

I am at the other side of this, a friend is in your position and sometimes I am so careful to say anything that might seem silly and trivial that I've stopped sharing with her. She said she feels people are leaving her out and tip toeing around her and it makes her feel so obviously different. It's very tricky because lovely as she is, I'm sure she resents me, how could she not. But the truth is while I have been really lucky, my life still has its own stresses and I am absolutely not trivial.

I'm really sorry for you OP. It must be so heartbreaking.

Yes in England.
I think for my illness there is a support group.

The thing that scares me is that some of the people in this group are obviously much worse off than me, they are at stage 4 of this illness

I see this when i go to my appointments, they mix us all together so i may go into clinic and be sitting next to someone who is in end stages and it rattles me for days 'cos i know, one day that will be me

Years ago I watched a programme about a young girl who I think had had to have a leg amputated. She said when she was feeling sorry for herself she asked "why me?". Her mother replied "why not you?"

It sounds really harsh but I've often thought about this and remind myself that there's no reason why I should be able to avoid bad luck any more than anyone.

As tough as it is for you, they still have the normal day to day issues. It doesn't mean they don't care

I don't feel angry about any of it - and certainly not at my family and friends - i don't even feel bitter towards them- none of this is their doing.

I just feel bitter in general, at my failing body - like i cannot go and walk up a hill if i wanted to, if you see what i mean.

I am sure your friend does not resent you. She prob just resents her situation such as it is - same as i do.

Indeed its very true, that

It is really difficult. I also have a degenerative illness and it really rankles when perfectly healthy people complain about minor issues. I also get irrationally pissed off when my partner is ill.or takes time of work for minor illness or complains about little things.

However, I do try to keep that under control because being bitter is only going to make my life worse. I can't force other people to enjoy the good fortune they have, but I can live my best life.

Ultimately I have had to distance from some people and I absolutely can't discuss my issues with some people in my life because they just don't get it. On the outside I probably seem quite well but often I really am not.

I know they do care