Coping with ‘still’ being disowned

Family has to have a broader meaning or I wouldn’t survive. I put on a good front but what silently rips me apart everyday does so even more relentlessly at this time of year. So many of my fellow patients have also been disowned by members of their family, courtesy of neuro’ symptoms and the resulting accumulated misunderstandings. It’s a horrific ‘norm’ but I never thought my family would be that kind of normal. We were so close for so long. Two family members outright believe I’m some kind of opposite of me, one has never said what they think but hasn’t acknowledged any messages or even my basic existence since the others disowned me. One definitely knows I’m still me and I am blessed to have them in my life.

Family is those we care most about and who cares most about us. Some of those I care most about think bizarrely incorrect things of me which is a daily torture I struggle with. But the rest of the people in my life know who I am and their (your) mutually reciprocated love and care is what helps me to keep going. Thank you. For just being you. I love you being you.

Like many other patients I keep thinking that one day this nightmare will end. That those three members of my family will wake up one day and remember that I’m me but after, what is it now? Five or six years? I try really hard not to remember how long it’s been. After this long I have to find a way to let go of the need for that to happen whilst still keeping hope more generally. I have to find a way to stop the ‘why? wtf? how-is-this-even-possible? argh! I-can’t-cope-with-how-wrongly-they’ve-got-me’ going round and roouund my head each day.

Pain of confusing loss, broken heart

I live by distraction. It’s a chronic illness tool for survival which I try to apply to this kind of pain as well. Distraction is the only way I keep going in this regard but at this time of year when Magic Dude is at work and I can’t phone my Mum to wish her a happy Christmas because she’d hang up on me over stuff I don’t even understand, well, it’s a whole new level of hurt and confusion.

There’s aspects we hang on to in the hope that an answer will magically appear. In my case I’ll likely never find out what the confusing conversations were taken to mean. They were during my neuro’ downslide which was reducing my processing so swiftly that none of us stood a chance of finding out about that before it affected communications and interpretations. And why hang onto that? Even with the med’s that I have now I can’t read the explanatory email because my fight or flight still responds by trying to make me pass out. I actually tried to reply to that email in the beginning. We often try to deal with things as we would have pre-illness because we don’t realise at the time how cognitively compromised we can be. I made that mistake. I would read one paragraph then battle not to pass out and then, once I was vaguely upright again, I’d attempt a reply to that one paragraph without realising how severely my processing was being affected. It took me three months to write a reply because it took so many days to recuperate after reading each paragraph. You’d think I’d have cottoned on but I just thought it was the extreme distress causing it. I’d never been disowned before, but I’d never been so cognitively compromised before either.

To this day I have no idea what was in the email I received or the one I sent and as I can’t read either without getting severely symptomatic I have to accept that I am unlikely to ever know. And I think this is the issue for so many in this situation – we never get to resolve it, we never get to correct each other’s misunderstandings. It remains an open case. There’s no real understanding of how this came to be, it just happened one day out of the blue and that’s why we struggle to find a way forward. Because it’s not just the loss, it’s the fact that the loss seems so random and inexplicable. Being unaware of any comprehensible reasons for such an extreme life decision makes it a lot harder to accept and cope with. And that shock never seems to go away. Every day it slaps us in the face again. Having a faulty nervous system sucks.

One thing I do manage though is to hang onto what was. Before the inexplicable. Maybe that makes it harder in some ways but it definitely makes it easier to not implode entirely. I remember when Mum knew who I was. All those years, all that love, all those shared experiences – they are not erased and they’re not changed to fit with my new reality. They are a part of me and of my journey to who I am today. Admittedly who I am today was also massively impacted by being disowned but I do not have to let go of those good memories to deal with the confusing past few years. The good and the bad times are not mutually exclusive, they can co-exist Shroedinger style. Which can also be upsetting as the contrast is so extreme. But it forces me to look at the now. What I want from life in it’s current reality. And prodding me to keep focused on the present is no bad thing at all. That’s where life gets lived after all. I want to fill it with smiles and goodness.

So in each moment – what would help with the smiles thing? If I find I’m a bit stuck… planning housey stuff and sketching ideas (refocuses my mind to positive developing stuff), arty stuff (currently embroidering my first ever home-made curtains, they’re gonna be the prettiest bodge-job ever 😉 ), playing Lord of the Rings Online (it’s currently the Yuletide festival on there!), Facebook (connections with friends), online ‘window’ shopping (pretty stuff!), sometimes I can handle some music (maybe something enthusiastic like Florence and the Machine’s ‘Dog Days are Over’ or perhaps something beautifully chilled like Stevie Ray-Vaughan’s version of ‘Little Wing’ or delightfully nervous-system-calming like Ry Cooder’s ‘Dark is the Night’). What would your go-to list be? And would it be helpful to have that list up somewhere so that you can see it when your nervous system is raging or the thoughts are circling endlessly round and your cognition needs a helping hint?

This post was prompted by the first acknowledgement of my existence in aaaall this time by that one family member: today they removed me from an old message group. So I guess I finally have my answer on whether a) they wanted to have contact but felt caught in the middle, or b) it has been their choice to avoid me all these years. Maybe that’s helpful. I’m not sure yet. Maybe that’s one less question to drill into my soul each and every day.

I wanted to share my experience with my fellow patients so that you know that you are not alone. If you’re struggling with this kind of loss I want you to know that I ‘get it’ and I’m sending love and hugs. I am open about my loss, my distress, my confusion, my ongoing attempts to cope all these years later because this kind of stuff happens and I want you to be able to talk about it if you need to. It’s okay to talk about it. A common misnomer is that loss and grief get ‘better/easier with time’ whereas it’s really that we get better at coping with it. Of course it can be difficult to get better at coping when you’ve got a faulty nervous system that freaks out the moment that big-stuff-subject pops into your head. Hence that handy list of calming in-the-now stuff.

Getting my feelings down in writing also kind of helps. When this stuff begins to devour me I need to get it out somehow. The process naturally makes me re-assess my approach and behaviour which helps me think about what I need to work on next to better cope with the loss and confusion. There’s plenty of research on how writing can be helpful. If you need to talk and there’s no-one around at the time it’s another option to get those endlessly whirling thoughts out of your head. Maybe give it try. Poetry can be pretty cathartic so don’t be afraid of different types of writing. Write like no-one’s ever going to see it because no-one ever has to.

If this post makes you feel any better, any less alone, then hopefully you now know that it’s okay to feel how you feel. This is no easy or quick fix. We are complex beings even without the chronic neuro-illness complications. But it’s okay to feel and it might help to get some of those feelings out, whether that’s onto paper or with a trusted friend. You don’t have to bottle it up.

And if you know someone who is struggling with the impacts of chronic illness on their family attachments (or indeed struggling in any way). I want you to know that just by listening, by acknowledging, just by being you – you make a difference. There’s no need to encourage them to talk endlessly about things, (with conditions like mine that could actually rile up the nervous system even more), just being an ear and then being the much loved distraction that you are helps enormously.

Wishing you smiles and goodness,

Sending love to you all, xx

5 thoughts on “Coping with ‘still’ being disowned

  1. I can’t even begin to imagine how you’ve been feeling over these last few years. I know (knew) your family and it was hard enough for ME to understand what happened. You’re a courageous, wonderful woman (and best friend) and I love you xxx

    • Aw, thanks Beastie xx
      It’s present daily and always has been. I’ve been through all the grieving phases but there’s never any closure so the ‘whyyyy?’ is a permanent part of me.
      I’m in another period of severe neuro downslide and just (over several days, anyway) wrote a blog post about that. Seeing the list of symptoms made me realise just how much of that loss must have been down to my neuro’ incapacity + my Mum not knowing that was the state my brain was in. I knew my brain was fried but didn’t know how badly or why and in that state I couldn’t explain anything I just kept saying that I didn’t understand, didn’t remember etc. Judging from my memory now, I now realise it’s entirely possible that I didn’t remember entire convos immediately after having them. Which would have looked extremely fake and suss to someone unaware of my neurological state. One day I’ll write a letter, but I’ve been saying that for years and can’t face it. Writing about it makes my dysautonomia symptoms sooo much worse and she’ll likely think I’m making it up so I guess I’d have to include a literature review on my condition(s) just to prove it’s a real thing. :-/ Just can’t face the potential negatives coming back at me when all I want to do is let her know that I’m actually me after all. But to move on and bypass closure I think I have to tell her for my own sake. She can ignore it and carry on hating who she thinks I am and I might actually be able to move on eh?! Or cope. Or something!
      Love you chick xox

  2. My dear Elle,
    Thank you for such an exquisitely personal, painful, and honest post – one I sadly realize too many share similar issues and experiences with you.

    Your bravery and selflessness in addressing the topic cannot be underestimated. I’m so sorry for what this surely took from you, on top of what the last handful of years’ loss has taken.

    Knowing you even as I do it seems incomprehensible that anyone, let alone your closest family, might think this of you. You are far too kind, caring, empathetic, and wonderful in all ways to have suffered so painfully! It is so bloody unfair I find myself here raging against the horror, the shocking… Injustice of it all, and I fantasize about looking up your family and setting them right for their awful, terrible wrongs against you…

    Excuse me, but fuck them. That’s right, I said FUCK THEM. How DARE they treat our wonderful Elle so woefully, so cruelly?! Who in the hell do they think they ARE?!?

    You are given a child, niece, cousin, etc – it so many in our lives. They are special! We are family because we are related, and that foundation of closeness is intended, I thought, to teach us to love, trust, and how to rely on others while also being reliable to others.

    Your close relatives seem to have screwed this up SO royally I continue to be stunned, and inclined to use rude words to describe them. Perhaps a good British term: this is complete BOLLOCKS.

    Just when you needed them most they selfishly claim to think you’re *whatever*. More bollocks! Excuses. Sounds to me like *they* couldn’t deal with your increasing disability – again, the utmost in selfish fuckery.

    Amongst my seething anger at their gross selfishness is my utter heartbreak at their incomprehensible cruelty toward you… Such an exceptionally beautiful, kind, loving soul!!

    Would that I could wrap you in the most healing of hugs, and then take up the sword I do not have, but could easily acquire, and slay this dragon beast that torments you daily.

    I would do it gladly, and I would do it with a small but mighty army of people who, whether near or far to you, love you wholly, unconditionally, and with great gusto!

    I know I, without stopping to ask, can actually speak for the rest of the crew in this case because I KNOW how strongly we all feel…

    Might I humbly offer our slightly motley group as your willing, and extremely honoured, family?!? It might not be quite the same, but I offer myself with eager and honest intent, and much love to give.

    Always here when you need or want. Just a phone call, or Skype session away, dear one.

    Big, huge, yet gentle, huggles. xox

    • Gosh!

      First of all – Of coouurse you’re family. That’s what I meant about the broader meaning of family. You are the ones I care about and who care about me in return. You are the ones who help me to survive. Innit. ( <– very dahn Saarf way for the UK yoof to finish their speech with these days 😉 ).

      Thank you. For your love, for your wish to help, for being you.

      My knee-jerk response to anyone dissing my family is the same as it ever was and that tells me a lot about myself and where I'm at with dealing with this splinched reality. I can't say or feel the things that you do towards my family because I know they're a) only human and b) were up to their eyeballs in a relentless, horrible and incredibly stressful situation that skewed their views and understandings. I know that doesn't excuse it. Yeah, they screwed up. They think they made the right decision though, because they don't know they screwed up. They apparently spent six months making absolutely sure that I really was such a bad sort. The trouble is that those months were after my neuro changes had started seriously getting into swing so I know I will have added to what they thought by happily continuing with convo's even though I kept thinking that I must be missing something because they didn't entirely make sense. And that's where the neuro' downslide did a number on me and my family.

      It's hard to have a 'pain condition' that later transpires to be a multi-systemic bastard.

      Anyway, I'm not going with blame. I never have. It wouldn't help me to cope if I did. I did get angry for a very very short time. I think it took about a year before I realised that my Mum should have knoooown I wasn't the type to choose to do or say stuff that would hurt others. But the anger was so shortlived that I am left with relentless whyyyyys that never bloody shut up! Like I said on my Facebook page, tea and shortbread FTW! Distraction is key, but the love of my friends is pure magic. Thank you Lady Moon xx

What do you think of this post? Elle and the Auto Gnome welcome feedback, x

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