Handhold please- Struggling with another life-limiting diagnosis linked to childhood neglect

[SummerFeverVenice]

After escaping a horrific childhood, I used to think naively perhaps that I could heal and it never affect my life expectancy. I already knew the malnutrition/hunger had stunted my growth so I am very short in stature.

I was recently diagnosed with osteoporosis despite doing weight bearing exercise my entire life and managing to feed myself from around age 12 by working cash in hand. That was linked to childhood neglect and malnutrition starting in the womb. But at least I can get treatments for it- alendronic acid.

I have had and beat skin cancer and breast cancer. Skin cancer was likely due to my parents refusing to use sun cream on us as kids as they believed it caused cancer and we spent every summer in the Med getting brown as Walnuts.

But in my 1yr post breast cancer surgery check up I again complained of my worsening rib pains and arm numbness and was referred for a CT scan.

Result- Moderate centrilobular emphysema

I never smoked and never hung out in smoke filled clubs because it always triggered my asthma. I have my whole life been very health conscious.

The cause of my emphysema? Yet more neglect in my childhood. I was not diagnosed with or treated for my asthma until I was 14 and the school intervened. Up until then, I was getting bronchitis 3-4 times a year, and pneumonia at least once a year. My parents refused to let me stay even one night in hospital. I’d be sent home with antibiotics and steroids that after 2-3days my parents would stop giving me and lock them away saying I didn’t need them even though these were 10day courses at a minimum. This meant my lungs were permanently scarred and I never had full lung capacity.

I had no idea this put me at high risk of developing emphysema at a younger age than a heavy smoker! (I am 51)

Just when I think I’ve seen all the consequences of an unspeakable childhood manifest, something new and nasty pops up. It’s like even from beyond the grave my parents are still trying to kill me. It’s brought up all kinds of awful feelings and memories.

I am waiting on a referral to a pulmonologist. However everything online suggested as treatment to slow the progression, I already do and have done due to my asthma. And yet I’m at moderate, stage II. I read that I have a 1 in 3 chance of dying in the next 4 years. That’s worse odds than I had for my breast cancer. I really don’t want to die and once again life feels so very unfair.

I don’t know why I am trauma dumping here. I guess because so few people understand.

Hi op I'm so sorry to hear this. It sounds like a lot to be dealing with on your own. It must be so hard to be dealing with illness caused by childhood neglect/abuse when you were completely powerless and subject to whatever choices they made. Have you had any counselling to process the trauma of it all?

You must be so so angry. They sound like terrible parents. Vent away.

I’m so sorry that you have to deal with that, and I’m sorry no one intervened when you were a child. You should have been protected. Someone should have stepped up for you.
I was a foster carer for a while and had children arrive with difficult behaviour around food because they’d had such a chaotic, neglectful start. I don’t think people really understand the implications for children, even into adulthood as you are having to manage now.

There’s nothing we can say except, shit! That’s appalling. I wish it were different.

Hello @Owly11
yes I have had years and years of therapy to deal with the child abuse. It’s really only focussed on the physical and sexual abuse as I have cPTSD from that. I had talked about the neglect as well as the background context, but it’s not really viewed as seriously? And no one has really talked to me about neglect actually shortening my life to such a degree and how to accept it. I am realising the horror of it now in middle age.

My dad had to work HARD to drink himself to death before the booze killed him at 76 so it’s hard to reconcile that with me doing everything I could to be healthy and be alive and possibly being dead before 55. My mum mixed booze with driving, so she died driving while intoxicated at 55.

Its not fair on me, my husband, or my kids. I feel awful for complaining too as so many have it worse than me and die much younger.

I guess what hurts is that it’s not bad luck, it’s the direct consequences of their decisions. It feels very personal and almost like I am being murdered slowly by my parents even though they are gone.

Thank you @MyDayMyWay and @PrizedPickledPopcorn for your support. It’s helping to not be screaming into a black hole. 😭

I’m so sorry. You deserved much better

I'm so sorry you had to deal with so much as a child and are still dealing with effects of it now. It's testament to your resillience that you did what you could to counter the effects of the neglect through things like exercise.

I see you have had support for mental health and the trauma you've experienced but it might be worth speaking to someone specifically about this new impact. I understand completely what you mean about feeling like your parents are still harming you now. Dealing with that plus the grief of what you thought your life could be vs what it will be now are worth exploring further as it may help you cope.

It sounds like you have the love of your husband and I hope others who can support you through this.

You say no one spoke to you about the impact of neglect, that it was seen as less important than the other abuse you suffered.
Neglect hasn’t that long been seen as abuse. It used to be ‘abuse and neglect’, that neglect was merely an ‘absence’ of good care. Now neglect is abuse in its own right. None the less, the degree of neglect you suffered is very extreme- it wouldn’t surprise me if these kinds of consequences are not often seen.

Without being flippant, they worked hard at killing themselves with alcohol, the worked pretty damn hard at killing you with neglect. 💐 Fuckers.

I’m so sorry OP, childhood adverse experiences are now known to be linked to many life limiting conditions as an adult. I truly cannot fathom how parents who could afford to take their children to the med every summer could neglect their children nutritionally to the point of stunting their growth. You sound like a lovely person who has overcome a lot and continues to x

I am so sorry.

I’m so sorry you’re having to deal with this, OP. It’s not fair and you have every right to be angry. I don’t have any advice, but will be a willing ear if you need to vent.

This is so sad. I feel terrible for you. I have inherited health problems from both parents sides of the family and that's bad enough without it being through neglect or malevolence. I hope you can get some additional support.

Im sorry very sorry @SummerFeverVenice, you didn't deserve any of that.

it might be worth speaking to someone specifically about this new impact. I understand completely what you mean about feeling like your parents are still harming you now. Dealing with that plus the grief of what you thought your life could be vs what it will be now are worth exploring further as it may help you cope.

This is very true @Wonderbug81 I will see what I can access.

That's such a lot to deal with. The hurt must be massive.

I immediately wondered if there is any support group, or network, for people who have experienced this type of neglect? Talking to other people who truly understand can be helpful, if such a thing exists.

It would be amazing if there were a support group that was centred on neglect.

There is a website called Out of the Fog and also a sister site Out of the storm which might be useful