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.
Indisposed and Undiagnosed 