Lived Experience Forum

[Got_the_tshirt]

It feels like the pain will never end.

It's been over 3 years since I had a breakdown and over 20 since I was first diagnosed with depression (MDD).

It hurts everyday. I get windows where I can appear to function normally, but they are brief. A few hours per day at best. The rest of the day my mood is poor and hardly a day goes by where I don't wish I wasn't here. I'm not going anywhere. I'll continue to endure - if nothing else for my family - but it hurts, is exhausting and feels relentless.

I have always struggled to explain to anyone what it feels like (largely because I couldn't understand it myself enough to put it into words). However, last night I found as good a way to explain it as I've had yet.

I was watching a movie with my wife and a non central character died in a WWII hospital. He seemed largely alone in life. We had not been introduced to any of his life connections, family, friends etc, so while his death was sad - it wasn't like losing one of the central characters to whom the viewer had become attached. He was sort of like an island, who was in bed dying from a head wound (which was obviously fatal but he didn't know that) and one of the main characters was his nurse - who was with him, and held his hand and talked to him - to give him comfort in his last few minutes of life.

When he passed away - as we knew he was going to - I felt "lucky bugger". That was what I wish for - to be able to die peacefully. For the ongoing pain to stop, without leaving others behind him to deal with losing him. (Of course I presume there must be some somewhere that would be distraught at his death, but not having been introduced to such characters in the movie it was as though he peacefully ended his pain and that was the end of his story).

It was extremely upsetting to experience my reaction. My jealousy of a dying character. That he would find the rest and peace that I so crave, by dying quietly and peacefully - and seemingly not be missed. My reaction startled me, but also crystallised how I feel in a way I hadn't been able to pin down before.

Everyday for years I have wanted to quietly exit like that. To go to sleep and not wake up. To find rest and peace - and for the pain to stop. But also not to leave any carnage or devastation behind me.

I know it's completely unrealistic - but understanding how I felt so clearly for the first time was: profound; awful; scary; upsetting; and a whole range of other complex emotions. 

To understand that was how I felt was like getting the answer to a long asked question. A question I think I had felt, but didn't understand or know how to ask (or put into words)?

I was in tears at the end of the movie and explained to my wife why I was upset - not only was my pain such that I would wish for an ending like that - but also the extreme guilt for feeling that way - given I am blessed to have such an amazing wife and beautiful children. It's a torturous tension that I battle with on a daily basis and, before yesterday, while I knew I was battling, I didn't comprehend the nature of the battle - and why all the pain associated with it was so difficult. I just knew everyday hurt to varying degrees - but almost always included the thought "Gee I wish I didn't exist. That I could disappear from the world and not leave a hole behind."

So I suppose I have 2 questions:

1. Does anyone else relate to any of what I've described above?

2. Does anyone else feel like the pain is there everyday, has been there everyday for as long as they remember, and is likely to be there forever?

Strangely, I feel better in a way - because I now have a way of better illustrating / explaining to people what it feels like to be me (because even those closest to me, despite their best efforts, just don't know - and of course how can they? Since they don't live it 24/7, and I haven't been able to explain it to them [not to mention that it feels like sitting them down to try and explain it feels extremely selfish - so I rarely try]).

As upsetting as I know it was for my wife to know that's how I feel, and how I live, she (as always) was amazing - and her having that insight into me will help a lot. She already knew better than anyone how hard things were for me each day, but she now knows even more how difficult and painful it is for me just to continue enduring - each hour, day, moth, year...

But I think it might also help to know if others felt like (at least a degree of) mental pain was likely to be part of their life forever (even though of course we hope respite might come). Because it might help me accept that is potentially my reality - and so not feeling better or improving is not a continual failure - it is just the way things are. Accepting that might actually make it easier for me to cope - and move forward (as weird as I expect that sounds!).

Thanks for listening.

Please let me know if you can relate to any of it - or have had similar feelings.

Take care,

GTT

[Millieme]

I can relate to alot of what you wrote, i struggle with mdd also and other things. life is completely overwhelming, even the everyday things that i know i should just be ok with, the 'smaller' problems that others would probably just find inconvenient or manage. I have this massive heaviness and fear that is a constant, its just always there and weighing me down. Sometimes the heaviness is worse than the fear and sometimes the fear is worse. but generally its unbearable. I find it hard to notice any inbetweens. no answers for fixing anything though. i have a routine and i problem solve and do pros and cons lists when i cant make a decision (and then still cant make a decision!), I do the mindfullness and other (DBT) strategies and they help me to survive but i wouldnt say that it equals living either. others say look for positives and have hope but i dont see it today.

[Got_the_tshirt]

Hi @Millieme 

Thank you so much for your reply🙏!

While I'm so sorry you feel that way, it helps to know I'm not the only one. I can definitely relate to what you describe 😥.

The well meaning offers of looking for positives and having hope (that you mentioned) can be tricky because: sometimes you can't see any positives - and so feel there is no hope; other times if you see positives, but still feel like crap, that can make you feel worse (for me guilt for lacking gratitude can kick in here); and sometimes if you feel hope, and then stumble or it doesn't turn out how you'd hoped, it just feels like yet another failure. It's a tricky space. 

Like you, I also find that various coping mechanisms help me survive / endure - and that's obviously important - but the feeling, like gravity, of a constant negative weight / pull, is hard. Especially when it feels relentless and never likely to end. And it would be nice to feel like we're doing more than surviving / enduring - and actually be living.

I'm doing all I can - following treatment plans and the ongoing work with my psychiatrist and counsellor - but it seems I've hit a bit of a road block (having improved in lots of ways since I was at my "worst", but that improvement seems to have stalled for sometime now).

I don't expect there's a magic fix. But perhaps there's a better way to cope?

I suppose my question is that if I am to continue to feel this way, at least to an extent, on most days - if I can mange to accept that unfortunate reality - might I find ways to live? (Rather than just endure)?

Maybe if I knew that for me it was a permanent disability, rather than wondering if it might be - that certainty (although not ideal) might actually be better than being in a permanent state of limbo? It might provide some clarity for moving forward? And perhaps stop me from chasing outcomes which may be unrealistic, futile, and therefore demoralising - which actually make the pain worse than it might need to be - and wear me out more (which can feed a negative cycle).

Perhaps then I could start adjusting to my reality, rather than wondering what it is, what it might be, or worse - fruitlessly trying to change it into what I think it should be?

Perhaps finding "acceptance" would give me permission to let things be as they are, or might be, and perhaps minimise the pain's impact (even if it doesn't go away). Rather than feel as I do now: like I should be improving, beating it, getting better, or getting over it in some way. That battle seems futile (and exhausting). Whereas if I can accept a degree of pain as reality - and stop fighting it - might I better spend what energy I do have elsewhere? Making the best of what it is? Rather than always dwelling on the pain (which doesn't seem to help)?

But I worry that there's a fine line between "healthy acceptance" and "wallowing" or "giving up". Pushing at or fighting the pain hurts. Wallowing in it hurts. Is accepting the pain a healthier middle ground? 🤔

Sorry if there's some repretition in here - it's a difficult thought process to explain.

I'd love to hear from someone who might have been here, accepted the possibility of a degree of pain from now on, and thereby either felt a bit better and/or more able to live as things are - with the pain - rather than: constantly fighting it; wishing for something different; and just enduring/surviving (noting that enduring/surviving is often not simple!).

Not sure if that makes sense? But perhaps if someone has that experience it could help you @Millieme  as well as me? Even if only a little bit?

Thanks again for replying. I'm sorry you also struggle like me and that today you don't see hope. But the upside is that we've both endured some pretty rough stuff - and survived to share our thoughts and experiences💪. It's easy to forget how well we've done to get this far👍. Hopefully together we can go ever further. Please stay in touch if you think it might help.

Thinking of you and best wishes,

GTT