How do people cope with a life limiting diagnosis

[CrumblyOwl]

I am currently undergoing testing for a life limiting lung disease & wondering how people cope with being told bad news about life limiting illness.

Bit of background, I was diagnosed with Afib about 5 years ago but recently have been told I have PBC (auto immune) which has done some damage to my liver, a severely dilated heart (30% EJ) & have now been told a recent scan has shown I have damage to my lungs & am undergoing testing for a serious lung disease.

How do people stay positive in the face of potentially not having that long left (i'm 51) as i'm really struggling at the moment

@CrumblyOwl I'm so sorry that you haven't had any responses. You seem so young to have such a lot of things like this

Read Sir Chris Hoy's new book, or watch his interview on iplayer.

My cancer became stage 4 in 2019. I was on my own at the appointment and asked my consultant if that meant I was dying. He said not in the next 12 months which was not exactly the most reassuring reply.
Drove home blanking it out and I live on my own so had nobody waiting to ask me how it went.
Anyway, the thing is that you just have to keep breathing in and out until you can’t anymore.
Distraction is what is needed and don’t focus on what you have no control over.
Do the stuff you enjoy and bollocks to the rest wherever possible.
Weed out crap people from your life. Although actually the good thing is they mostly do this themselves.
The future cannot be fully known. Treatment improves all the time and stats on bloody google are years out of date.
Keep on keeping on.

I’m so sorry to hear this Crumblyowl and there are no easy answers or I haven’t found them. It literally is for me just taking one day at a time.

I have autoimmune lung disease, a variant that once it gets going, has a very poor outcome. I tell myself all the time that none of us know how long we have on this planet, getting to old age was never guaranteed and I thank my lucky stars that I have made it into middle age.

It will keep hitting you in stages and the fear can be absolutely overwhelming, but slowly it gets easier or more manageable. Lots of crying and sadness are all par of the course but just try to eat well, stay as active as you can, to support your treatment and talk about it - find support groups but don’t read too much online, I know I did in the early stages and it really wasn’t helpful.

I don't know to be honest...I just keep going day by day, and trying to stay optimistic that medications are constantly improving that could change things for my future. I try to be so grateful for what I have everyday and the health status I currently have. I know it will get worse for me, not sure exactly when my health will degrade to the point where I can't enjoy life anymore, so I try to enjoy the fact life is good right now.

For info, I also have a progressive lung disorder. I'm 39 and have two children, 3 and 5. Currently stable on meds and no idea when progression will ramp up. I often feel like a ticking time bomb.

A relative was diagnosed with a life limiting lung disease in their 50’s. Was told they wouldn’t see their 60th birthday. They’re now 73.

I guess the answer is to continue to have hope, and remember doctors aren’t infallible.

im so sorry to hear of this though OP. I have health anxiety and what you describe is my number 1 fear. Sending love and strength.

Came back to say sorry because reading it back I now see that my breathing in and out comment was likely badly worded for you.
It is a phrase that I use when people try the warrior/ inspiration/ tragic victim (delete as appropriate) bollocks which abounds about people with cancer or other life limiting illnesses.
That and all the toxic positivity really gets on my tits.
I just meant to say that you keep living until you don’t.

How life limiting all of these conditions can be depends on your age and how well you respond to treatment. I've seen patients with all of your conditions (including serious lung problems) live for 20+ years. Try to stay away from Google and let your consultants give you the latest info.

OP I have been diagnosed with a potentially life limiting autoimmune disease (systemic sclerosis) and am a year younger than you. and the info online is pretty scary. However having joined a few FB groups there are people living WITH the disease for decades. My point being everyone’s journey is different.
My diagnosis has changed my perspective on life and I am now making plans to crack on and do as many of the things I want rather than waiting for retirement and In some ways its been freeing. I no longer worry about a lot if things I previously did.
If your lung disease is fibrosis there are some new treatments which might help such as OFEV - there will be some things you fan do to improve your own general health too (important for a sense of control).

Thank you all so much for your replies, everyone’s comments have helped & I hope you are all doing well

@mittens67 don’t worry, I knew what you were saying
@Dreamsofcruise yes, they have found some fibrosis & suspect it’s either down to auto immune or my heart

I don't have a life-limiting condition, but I have seen someone close to me with one and also have had a critical incident but survived. My feeling is that there is no right way to think about these things, but most people cope using a variety of methods and cycling them round from time to time, so feeling hope, despair, getting on with everyday life, speaking with others in a similar position, being on the internet/not being on the internet, pretending it isn't happening, facing it head on and accepting it, planning such as wills or pensions. It seems to change quite rapidly and you think you are in a good phase then you wobble, then you right yourself again. I've felt extreme acceptance of my impending death but then happy to be living again, these things are just not stable. I think you have had some great ideas on here about where to get support early on and then how you manage in the rest of your life will unfold as you go forward to it and depending what type of person and what types of treatments you need. It is a good idea to reach out to others at some time point though as it can feel very lonely as most of the world is not living this experience.

I don't think anyone probably "stays positive" all the time. Don't put yourself under pressure to do so.
I'm reading Miranda Hart's book with 10 ways to cope with illness. Her style is somewhat annoying but the key points are worth persevering with.

Hello all, accidentally came across this post today. Sorry to hear about your health problems. I hope, faith there is a miracle drug, medicines for all diseases and illness.
Have you ever been to ‘HealthUnlocked’? I have used it myself. A useful site for various health conditions, where you can chat, get support and it is free. xx

I was diagnosed with heart issues in May inc the ticking time bomb of a thoracic aortic aneurysm… then in July .. breast cancer .. I’ve been having therapy and my therapist says to me “ if you knew you only had a certain amount of time left , what would you want that time to look like “
its helped be focus on the here and now and once chemo is over I’m just going to enjoy each day .. it’s not easy .. it dominates my thoughts .. but I’m trying to change my mindset .. I’m 52 ..

sorry to hear that @Rockschooldropout I hope your doing ok. It's very much the same for me at the moment with it dominating my every thought.

Some very helpful replies on here, thank you

I always think the healthiest person could have an accident and die tomorrow being outlived by those with all sorts of diagnosis's.

The crucial difference though is that the healthiest person you are talking about doesn't know that's their fate so they don't need to deal with the psychological weight of the knowledge of a short prognosis.

Plural of diagnosis is diagnoses. Don't mean to be bossy or a grammar nazi, it's illogical for English to have a plural like that!

@MrsKyppInterestingly I was discussing apostrophes with someone the other day, it’s something I really struggle with, I’m fine with connective words like do not equalling don’t but anything else seems to be beyond me.

I am dyslexic which makes things harder but I guess it’s a choice given I could set myself the task of learning them. Just seems a bit pointless when people mostly understand what I’m trying to say.

@stayathomegardener If people understand what you're trying to say that is what truly matters. Of course if you were an editor or something that would be different and it would matter, but other than for that sort of reason communication is what it's all about imo.

I just thought you might like to know that plural seeing as the word is so central to the subject of the thread; I certainly wasn't meaning it in a critical way at all.

Apostrophes seem to be difficult for loads of people, so you are far from alone with that. The main uses are exactly what you said: contractions (do not --- don't) and then also possession, so to indicate someone has or owns something eg the boy's lunch. But we shouldn't switch topics on this thread xxx

Back to the topic I'm really very, very sorry to hear what you're going through @CrumblyOwl Hearing your life will be shortened through illness is traumatic. It's incredibly unfair you've not only got PBC but a low LVEF too. And now the lung disease. I had cancer and the fear of it coming back and being terminal tortures my mind especially at night. It was a high grade stage 3 cancer with aggressive tendencies. We need to be kind to ourselves. How did your lung tests go, how are you now?

Thank you MrsKypp i'm feeling a lot better about thing, cardiologist seems reasonably happy with where my heart is, PBC is now well under control for the time being which is fantastic news
I am however still waiting on the lung function test which is finally booked for August however further scans have shown it doesn't seem to be as damaged as initial scans indicated. Fingers crossed the function tests give some answers

How are you getting on with things?

Thanks for your reply and update @CrumblyOwl

So good to hear you're feeling a lot better about things. Great about your heart and PBC. Fingers crossed for the lung tests.

I am ok, thanks for asking. It weighs on my mind though, especially at night. The terror of hearing I have to go back on chemo and that it's incurable; the thoughts of the suffering and death ahead. But as they say, live for today and don't steal tomorrow's worries or however that saying goes. Today I am ok and life is good.

My very best wishes. Let us know how your lung function tests go.