Lessons in Loss.

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The first entry from my journal in 2014 (first stages of illness).

I found this page in a tiny red leather back diary, dated back to late 2014; the period where I initially fell violently ill.
It is a time in my life that I try my hardest to not refer back to.
It was months spent in my house, bones in bed, staring at the walls to pass time, the smell of illness, being carried through public, struggling to eat, sleepless nights, a lot of blood noses and clotting, and unexplainable pain that had consumed my body day in, day out.

I am sure you have similar stories that you don’t enjoy thinking back to; the nightmare story of how the plague first began.

I was taken back when I first read my diary entry, and what followed.

A whirlwind of emotions came over me.
I was relieved that I did not take the step to end my own life, despite how agonizing each day was for me.
I was thankful that these words had been written, and so honestly, because I now had the opportunity to reflect.
Mostly, I was deeply saddened for the girl who wrote these words, as I knew very well what she was suffering at the time and how desperately she wanted a way out.

In that moment, (where I wrote the entry in my journal) I was in shock. I was very sick every single day. I rolled out of bed and sat in the same chair every single day. I was barely eating and experiencing a lot of pain that nobody could explain. I was exhausted from the testing I had had that came back “all clear”. I had no idea what had made me so sick, and why I worsened overnight. I had no answers, and my body was failing me.

Living was a struggle.

In that moment, I was so deep within the symptoms and darkness enveloping my thoughts, that my only interest was my own. I did not think about the reaction of my loved ones, or the potential for me to improve and/or make a recovery. It seemed impossible.
I wanted a way out, and fast…to make the decision to end my life and be freed from this nightmare once and for all. I was happy to give up the smiles from strangers in the streets, the shrill giggle from the children, the fresh air, beaches and warmness from cuddles.
I would give up everything, to feel nothing.
And nothing that anybody said could stop me.

Imagine a person with a Chronic Illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain.” (KJackson 2014)

One of the greatest challenges of Chronic/Invisible Illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss, and in this case it is the loss of one’s self.
The losses that accompany Chronic Illness are continual.
What differentiates physical death and loss from Chronic Illness Loss, is that we are not lost entirely. We lose emotionally, mentally and physically but we must continue to brave each day in our given bodies, whereas death is the loss of someone completely.

The loss that follows the one in our bodies varies. We may be forced to give up our career, which provides income. We lose money, which is used on treatments and appointments. We lose personal power, independence. We may lose friends and feel abandoned by loved ones. We may have to give up our hobbies and lose our self-worth. We may experience loss of control over our bodies. And we may have to let go of some of our goals, losing the future we had once envisioned for ourselves.

Suddenly, the beautiful, carefree lives we imagined for ourselves have crumbled, and we are going through the motions of grief like a song on repeat.

Numerous psychologists have organised Grief into stages: Denial/Disbelief, Anger, Guilt, Sadness/Depression, Acceptance. It makes sense for there to be a process of how we handle Grief and Loss, and I agree that we most certainly have to go through these stages, but I personally believe that when suffering with a Chronic, Invisible Illness we never reach that last stage entirely and we may go back and forth with the stages a million times over. There is no right way of going through the motions. The motions will not end, as long as this illness remains.

I am not here to put a negative, depressing spin on illness.
I am here to tell you that you are entitled to grieve the loss of your old self.
You can go through as many of the Grief stages as you like.
You are entitled to mourn, cry, feel jealousy, scream, contemplate fairness, isolate yourself…

Do whatever you need to do,
as many times as it has to be done,
for however long it has to be for.

But please, hear me when I say that you will come out of it and there will be a day when you will yearn for the brightness you once felt prior to being ill.
You will find the willpower to do something that you love again, to be reminded of how beautiful this world really is and to smile.
You will laugh again, really hard, and your chest will ache, but it will be worth it.
There will be smaller goals that you can set for yourself, that you will achieve, that will grow into larger goals.
There will be a day, (and hopefully a few of them) that is easier on your body, and your mind.
There will be days that go quicker than others.
And hey, you will have bad days. You will spiral back to the beginning and feel like you are reliving that initial moment over and over, but these downfall moments aren’t worth leaving this world for.
They are temporary.

There are so many lessons that I have learnt on my journey, (and I am sure there are many more to come) but the one that stands out the most is a recent one.
When we write about Depression and make the statement “I want to die”, it is actually our brain sending out an SOS signal to the rest of our body and inner thoughts that are torn between choices.
We have reached our limit, and by voicing this strong statement, part of us is actually hoping that there is a silver lining, that someone can save us, that our illness could be cured, that there is another way.
We are, in a way, talking ourselves out of doing it… we have a glimmer of hope that things can be different.
This warning, whether verbal or written on social media is very much real and I am in no way trying to make it sound like a game or a joke. The feeling of wanting to be freed from the pain, is very much real, and it is absolutely soul wrenching that people go through it (myself included) because they have made themselves believe that there really is no other way.

There are other ways.

I’m using myself as an example.
Look at that image again.
I know that you feel it too – the emptiness, the sadness… that there was no hope left. But, I somehow woke up every day for the next year.

And, I am still here.

I had really awful days.
I am currently having one now filled with sharp symptoms and brain fog (just quietly, I am struggling to tie up this piece nice and neatly).
I hit that low point time and time again and I convinced myself that death was my only option, but somewhere along the way, I found Specialists who were able to bring me slight relief.
I found love and care within strangers.
I had more stretches of good days than bad.
I was able to set goals, achieve them, and set more.
I stumble, but I pick myself up and each time I am stronger because I learnt how.
I learnt (and am still learning) about the medical system, diseases, techniques, relationships, and ultimately I learnt about and accepted my inner strength.

With time, I recognised that longing for death was simply a feeling. It was welcomed to be felt, as it was a sign of grieving the loss of my old life and self. It was apart of my own process.
It had to be felt, but so did other feelings and feelings that I was entitled to too… brighter, hopeful feelings.

This one lesson in itself gave me more control over my life and my ability to try and manage this disease.

I own this body, not my illness.

I can now take a step back during my bad spirals and look back to that dark, lonely moment where I wrote those painful words; and tell myself that I made the right decision to stay and that I have a place here… a story worth sharing.

And, so do you.

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44 comments

  1. I love this, and can relate heavily. January will mark two years since I first became chronically ill. Can I ask (and you don’t have to share, I know for some it’s very private) did you find any answers in the end? I know you said there were a lot of “all clear” tests, but I just wondered if they found any answers at the end?
    I ask because I’ve been tested for so many things. And some tests show nothing; others come back with reasons, but never anything that can explain all the symptoms (and the symptoms are serious, and incredibly similar to what you’re describing). I just wondered if you had any answers. Maybe one day I’ll get all mine.
    If you haven’t gotten all your answers (or any), I really hope you do.
    And thank you for writing such an inspirational blog.

    Liked by 1 person

    1. Hello and thank you (:

      To cut a long story short, I had Shingles and my immunity kind of fell apart after that. I was then diagnosed with mild Gastroparesis. It’s only a partial diagnosis, but my symptoms are quite harsh for a “mild” case and they can’t understand why. I suffer from a lot of symptoms that can’t be explained, and chronic pain (from the Shingles). My tests are the same. I get an all clear or I will be told that some of my levels are strangely high or low, but there is no reason as to why.
      If it is of any help one of my good specialists said that “time” heals cases like ours… when we’ve had every test under the sun!
      I’m hoping that in a year from now I’ll be a lot better than now.

      Thank you for your kind words. I’m always here for a chat if you need. My email is in the contact section xo

      Liked by 1 person

      1. Thank you!!! Something similar happened to me. I had Glandular Fever, then Meningitis, then encephalitis. And then I just didn’t get better. And I still haven’t. Some doctors say Chronic Fatigue, others say more serious things like Narcolepsy, some think IBS or IBD. Basically, no one knows – but something is wrong and it’s a terrible feeling. I understand completely. At the moment, my body is showing all the signs of an infection – but I don’t have an infection, and the doctors don’t understand that, either.
        I hope in a year from now you’ll be better, too.

        Liked by 1 person

      2. Oh sweetie! I had Glandular too! I just hd this talk with a friend the other day. We need these viruses to be rid from our blood… like completely wiped… or else some of our bodies suffer with these also symptoms.
        I get the Chronic Fatigue/IBS talk too but I’ve kindly asked them not to give me a label unless they are 100% sure I have these things. Which you can never be sure of.
        My body is the same.
        I have horrible tummy issues, nausea 24/7, dizziness, blurred vision, pain and fatigue. It’s shit!
        Again if you need help or want suggestions, let me know. I have hd heaps of tests and tried all natural and non natural things that you can think of!
        Just trying to get through each day as best as I can xx

        Liked by 1 person

      3. Me too!!! I have pretty much the same stuff!! I’ve had so many tests, both natural and not, and take so much medication. Glandular fever is the worst, isn’t it? I really wish the best for you!

        Liked by 1 person

  2. Thank you for writing this. In a strange way this is quite uplifting; there’s a real positive message in it. I wish suicide could be better understood. The death of a depressive is never a free decision. Their irrational view of the world, restricted as it is to the negative, drives them to seek that way out of the darkness. Suicide is an escape. I’m pleased that for today at least you can see the world with more clarity. Thank you for speaking so honestly and trying to change the perception of suicide.

    Liked by 1 person

  3. Cass!!!! I love this post and i relate so much ❤ I'm so proud of you; you inspire me to be my best and to keep writing. Thank you for your support and friendship. And, as always, sending healing vibes your way 🙂

    P.s. My next post (that I wrote yesterday and will post tomorrow) ends with the same "And so do you" sentence-I promise I didnt copy you, it's just a coincidence 😛

    Liked by 1 person

  4. Oh! That KJackson quote! Just perfect!!

    And I totally agree. People sometimes misunderstand the five stages of grief, thinking that you just progress nicely from denial to acceptance, and that’s that. But dealing with grief is more like a yoyo or a rollercoaster than a nice, flat one way street. You bounce back and forth between the different stages, sometimes even multiple times in one day!! New things are constantly cropping up, old things sneak back into your thoughts when you’re overwhelmed or frustrated… and it’s totally OKAY to need time and space to deal with them. It’s okay not to be Pollyanna all the time. It’s okay to cry, and stomp, and throw things (not at other people, obviously). It’s better than bottling it up inside.

    But then, take a deep breath, and let the storm pass. Even knowing there’ll be another storm some day, when you slide back down from ‘acceptance’ to something else.

    Liked by 1 person

    1. Ah, my point exactly! You understand!
      I wrote this more about the grief and stages, not about the depression. I just wanted people to realise that you are allowed to handle this however you want to. there is no right or wrong way, and there are definitely no perfect stages that we must follow!

      Liked by 1 person

      1. I don’t suffer from depression, thankfully. But when I was about 16, they trialled this med on me for about six weeks. I pretty much closed the blinds, sat in my room in the dark, and cried all day, every day, until they took me off the meds. It was like a medication-induced depression, but once they stopped that particular medication, I was fine again. That small month and a half experience, plus several close friends that suffer from depression, help me to understand more about what it’s like to live with.

        But even those without depression go through the stages of grief (which is what you are saying – I’m just agreeing with you!) I totally understand the craziness of the stages, because I’ve been there! (And am there… and will be there in the future!)
        It baffles me that there are people who think that everyone is going to process everything in exactly the same way, at exactly the same rate. Just… no.

        If you want to cry because you’re frustrated and scared, go ahead! If you want to get up at midnight and start a craft project because you need a distraction from your unhelpful thoughts – do it! It’s okay to be angry in the morning, and in denial at morning tea time, and accepting at lunch time, and angry / disbelieving / grieving by dinnertime!

        We are not Ronald Weasley – we have the emotional capacity of more than a teaspoon!

        Liked by 1 person

      2. Hahaha I love that last part!
        Oh medications are the worst! I have been on so many that bring on a different side of depression! I too locked myself away in the dark and cried through it…
        How awful that so many are experiencing the same thing worldwide? I think that was the biggest shock to me during my earlier blogging days… that there were so many others just like me… That I really wasn’t alone.

        Liked by 1 person

      3. I was really blessed in that I was never really absolutely alone. My Mum suffers from chronic illness too, although a different kind. She’d never even heard of what I have until I was finally diagnosed. But she knew what it was like to be tired, and to hurt everywhere, and to have doctors tell you it was all in your head. I started getting sick when I was 14, and she has been there for me every day since. (Not that she wasn’t supportive before I got sick! It was just different when I got sick too).

        But yes, finding others like me continues to amaze me, particularly when they’re close to my age (my Mum is not close to my age… for obvious reasons…). “You are not alone,” is such a powerful message – like someone has suddenly thrown open the blinds and let in the sun!

        Like

  5. I think this is one of the most uplifting and encouraging posts I have ever read, and it was something I definitely needed to hear. Thank you, thank you, thank you. I am so glad you held on and kept going when things got bad, and I’m glad that you were able to take something from those experiences and learn from them. Coming to the realizations that you came to (like that it’s ok to grieve in whatever ways you need to and that longing for death is only a feeling) shows an incredible amount of strength, growth, and understanding about your own personal journey. Reading this post was like an epiphany moment for me and will definitely help to make future bad days a little bit easier to deal with. ❤

    Liked by 2 people

    1. Oh Sarah! That is so lovely! So nice to wake up to. It was good for me to write it too because when I have shitty days I can go back on it as a reminder.
      I promise that eventually there will be better days, still bad ones, but there will be more good ones 😊

      Like

  6. I love love love this. I remember commenting on your early blog posts and telling you that one day things will be easier, one day things won’t seem so dark and although I know that you are by no means better, and you still have a long way to go, I’m so happy for you that you know that there is a way out of darkness. One foot in front of the other ❤ ❤ ❤ xxxxxxx

    Liked by 2 people

  7. I think you are very courageous, and I enjoyed reading this post. It is good to let people know and feel how difficult it can be to pick yourself up and carry on especially when faced with such huge challenges as this. I’m coming through a year of bad health, nothing as awful as what you’ve had but it lost me my job and although we’re managing because in NL you can get good support for a certain length of time, it’s a shock and a struggle all the same. Some people even tell me I’m ‘lucky’ these cold months to be at home (wow). Starting a blog four months ago has helped enormously and given me purpose, and the lovely comments and contacts with other bloggers is a huge plus. I wish you continued strength and improvement. Tough as it is, you have already discovered the gifts that can be found from hardship, trust me, these lessons will stand to you forever and carry you forward through life on wings that others can only dream of. Take care.

    Liked by 1 person

    1. Thank you for writing, reading and commenting.
      I too lost my job (my dream job) from this illness. I’m still stuck at home every day and have used blogging as my little outlet. Writing helps. Being alone and ill leaves us with a lot of time to think.
      I really hope you continue to write. I too hope your health improves and that you have better days
      xo

      Liked by 1 person

      1. thanks sweetheart! I feel I can use that word because your sweetness is evident, hope it’s ok with you! Yes, writing really helps. I miss my colleagues, the buzz etc. and the simple feeling of relying on what was my ‘normal life pattern’ but am focusing on recovery as best I can.Onwards and Upwards, right? I use humour to laugh at myself and my crappy situation, it works for me, although I’m not laughing every day. Life. A journey with many twists. I wish you a good day today.

        Like

  8. Wow. The emotions this drags up. The amount of times “I want to die” comes out, is scary. My whole life. But you’re right, it comes out and there is suddenly a jarring sense of realization that something is very wrong mentally that needs addressing. For me, that sentence usually comes out subconsciously, and it’s like a giant red flag telling me to reorganize my feelings. It’s scary. It’s really scary hearing loved ones say it too, and it’s such a helpless feeling.

    This is a very poignant writing, with a ton of relevance to Chronics. It’s really making me think today.

    Liked by 1 person

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