Five Stages of Misery…

Five Stages of Grief In Chronic Illness…?


It seems logical to go through it when you have a chronic illness… Grief is loss. With long-term chronic illness, you lose a lot, if not all, of your former life. You are thrown into a new one… one you didn’t ask for. One that is difficult, painful, traumatising, miserable… one where everything you once knew is no longer there. It’s all gone. Maybe even people have gone.

One day you were living your normal life, then one day – poof – it’s all gone. Everything is turned on its head. Upside down. Your world has imploded. Nothing will ever be the same again. Maybe you’re not dead, but it’s the death of your life. Grieving is surely inevitable… no?

Perhaps you get there – to Acceptance – quicker if you know what it is? Why this is happening.

It is difficult to accept an illness that remains undiagnosed and you don’t have a name. There is nothing to accept. There’s no answer.

So, you never get to that last stage. Not until you have something to accept.


Kübler-Ross Model:

  1. Anger
  2. Denial
  3. Bargaining
  4. Depression
  5. Acceptance


I feel three out of the five, oftentimes all at once: Anger, Depression, and Denial. They’re strong things to go through. I’m also really sure that the Aspergers in my brain is clouding everything more than normal. I have no idea what someone without it experiences – we’re all different – but being emotionally-incompetant cannot help one jot.

Let GoFibromyalgia, and other chronic pain, tends to come with a lot of emotional side effects, and the neuropathic pills adds to that. “Fibro Fog” turns up in patients with Fibromyalgia, then one of the more common symptoms of Pregabalin, at least, is various kinds of memory impairments.

I imagine the “Fibro Fog” turns up because dealing with so much pain is too much for the brain and mind to cope with, so it shuts down. It’s a fuse box with a switch that gets flicked – you can’t turn off one thing on its own; the brain has an “all or nothing” psychological reaction to such things as trauma… and that much pain is trauma. So it shuts down everything in the head, and “Fibo Fog” turns up, leaving the mind incapable of functioning.

Add Aspergers to that – where, basically, the mind is all you have to manage life and the world – and you have a volcano of confusion and frustration to contend with. I deal with things through my mind; I have no proper emotion, and what I do have doesn’t make sense and scares me. Makes me act out. Turns me into a terrified six-year-old child again. With every meltdown, the world stops, my brain disintegrates, and everything falls apart into a horrific nightmare that I can’t seem to wake up from… at least on my own.


Moving On?

My EQ is through the floor and somewhere past the centre of the earth. I don’t know how to cope with it – those three things. I don’t know if that is what I really feel either. I know I’m scared. Terrified. I now grieve for the things that have gone – I deeply miss everything that I’ve lost. ASD doesn’t allow much room for being able to deal with changes in any way. Taking everything away from someone like that is never going to end well… Usually in meltdowns. Which is what happened. Is happening. What keeps happening.

Tests In LifeIt’s been a year and a half, and I still can’t adjust to it. I have no answers. No help. I’ve received no therapy. The only medical intervention has been an MRI scan focused only on one small section of my spine. No other diagnostics has been carried out, unless you count some blood tests about a year and a half ago to try and rule out rheumatism.

It’s no wonder I’m stuck circling three of the Five Stages.

Answers are important. Knowing what’s wrong is important. It might not stop anyone going through the stages, but it probably helps you go through them faster. Acceptance is important to reach. I want to get there… but I have no idea how, especially since I have no clue as to what I am accepting.

What is it that’s making me this way? Can it be treated? Can it be cured? Is it long-term manageable? Will I always be unable to walk and need a wheelchair – or will I get better? Or at least be able to walk a little, even with a cane – maybe with the dog again? Can I do anything to make it better? Am I doing something wrong, that’s making it worse?  Something is making it worse… Unless it’s just progressing to whatever horrible conclusion it’s going to…

Just… what is it? What is making me like this? I need answers… I need to accept this.


Circles In My Mind…

So I keep circling. I have nowhere else to go. I’m not doing the Bargaining thing… it’s very pointless to try and compromise with an omnipotent being. So I’m stuck with the other three. One at a time, two maybe, and too often all of them all at once.

I can’t make sense of it. It’s all a jumble, everything all mixed up. Circling and spinning and jumbling. Kinda the reason why I asked for therapy over a year ago… but nothing turned up. After a year and a half, there’s nothing. I have no answers; I have no closure. Not even a real diagnosis. Not even my GP accepts the “Fibromyalgia” right now, because it’s a “diagnosis of elimination” and, frankly, nothing has been eliminated except a slipped disc. Sort of. Not even MRIs catch those sometimes. As a diagnosis of elimination goes, that kinda sucks. The Pain Clinic’s attempt at “eliminating everything” kinda stopped at one MRI and poking me once in the spine nine months before I saw them again. Somehow, I don’t think that completely qualifies.

I’m lucky; I have a GP that wants real answers and cares that I get better. Or at least have answers. He’s a good doctor.  I don’t expect to have a different diagnosis, but I want to know it’s definitely that. Not anything else. That everything else really has been eliminated. I suppose no one wants to have the wrong diagnosis, to have the wrong treatment – or worse,  no treatment.

I already went through that once with the depression/Asperger thing. I’m not willing to accept the first thing someone says.

 But until I do get something that is as concrete as possible, I really don’t know how I’m going to get to Acceptance anytime soon, or before… But somehow, I really want to try.



About delphinemusic

Over-enthusiastic Gamer, Goth, Geek, Techaholic, Dabbling Writer & Blogger, and Raging Coffeeholic ~ Loves Gadgets, Games, Tech... And Coffee. Lots and lots of coffee. ~ Obsessively-loving: Dragon Age Series, Mass Effect Triligy, The Witcher Games, Skyrim Special Edition, Elder Scrolls Online, Divinity: Original Sin Series (amongst others!) ~ ~ Self-Built Gaming Rig: i7-4970K, 16GB RAM, 128GB SSD, 1TB + 3TB HDD Storage, GTX 1070 8GB OC, 1150 ASUS Z97-A ATX mobo, Windows 10 ... Oh, and did I mention I love coffee...? View all posts by delphinemusic

2 responses to “Five Stages of Misery…

  • babycrow

    I get it! Or something of it. I was diagnosed with ME (chronic fatigue syndrome) several decades ago and have gone through/round-and-round these stages. I’m on Acceptance now, (with feeling much, much better either the cause or effect of that). I write a yoga blog, but some of my posts relate to ME if you’re interested:

    All best to you, with thanks for sharing your experiences.

  • My Small Surrenders

    I’ve been living undiagnosed for just over 18 months. I have a “working diagnosis” but won’t have a final one until after surgery. I understand your grieving because I am still going through it.
    I hope you get answers soon because I agree that knowing what to call something helps to put it in perspective and understand how to live with it

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