The Overlooked Grief of Chronic Illness.
Grief.
It’s such a deep, personal and unimaginably painfully heavy word.
When most people think about grief, they think of loved ones — friends, family, people you once knew, those that you never got the chance to know, the people that made you the person that you are today — passing away.
If somebody posts about grieving, the immediate assumption and comments are so often ‘I’m so sorry for your loss’.
But grief is multifaceted. It doesn’t have one secular reason.
I was seven years old when I first became chronically ill. In the space of three years, I lost all of the things that I thought made me who I was.
Ballet and other forms of dance, theatre school, learning guitar and piano, singing, the life that I had dreamt up, all of it was suddenly gone.
Then, I had to leave school. I became bedbound, needing help to change and sit up. I felt like I was outside of my body, in disbelief that this was happening to me, that this was going to be not just my current life, but my future life, too.
So, I know from personal experience that you don’t just grieve the ending of a life, but you can also grieve the ones that you will never get to discover, the ones that have unjustly changed dramatically.
When you’re diagnosed with a chronic illness or you become disabled, there is a type of pain and grief that no one, unless you’ve been through it yourself, will ever be able to understand.
You can try as hard as you can to empathise, to put yourself in my shoes, unless you’ve lived it. Unless you’re still living with it.
Because that’s the thing about chronic illness — it’s not a matter of the grief lessening as time wears on, because it will never end.
You will always be losing out on something; you will always look back on the years before you became chronically ill and think ‘why’, think ‘what if’. But the whys and the what-ifs don’t matter in the end.
You will always feel some kind of a loss from the friendships, relationships, education, opportunities, stability and overall life experiences. It’s a simple fact.
It never takes its time, it hits hard and fast. It upends your life, causing the constant feeling of hardship, failure and loss to become permanent.
Relieving that kind of grief is harder than anyone could imagine. It clings, it lingers, it tries its best to hold you in its clutches.
Yet, still, people who aren’t directly affected or know someone who is will say that we are lucky that we can’t work or go to school, that we get reasonable accommodations that people without chronic illnesses often view as advantageous.
Experiences and sentiments like that are exactly why chronic illness-related grief is not only a heavy load to bear on shaking shoulders, stumbling legs, and a weakened grip, but is severely overlooked — treated with such little care and understanding by able-bodied people. The lack of control that you suddenly have over your life, this new set of rules that your body will never let you bend or disobey, can be devastating at times.
Really, when you think about it, with chronic illness-related grief, you are still grieving a person. You’re grieving you — the person that you were, the person that you’re being made to give up and lose.
But just because your life didn’t wind up the way you had wanted or planned, or because you find yourself cursing the wind, asking God why me, grieving all that these conditions caused you to lose, that doesn’t mean that the grief has to overshadow your whole life.
It only has to be a small slice of the pie that is your life.
Living life with a chronic illness is far from easy. It is a kind of both physical and emotional pain that I wouldn’t wish on anyone — not even my worst enemy.
The strength, courage and determination that it takes to actively learn how to live your life as a chronically ill person is nothing short of astounding.
But the fact still remains: the grief is harrowing at times. It doesn’t matter how old you are, what your disability is…the likelihood is that you will have grieved your old life.
When you become chronically ill, the emotional pain is immense. If it isn’t the grief, it’s medical trauma, medical negligence, pain, fatigue. But no one ever pays attention to the grief, and oftentimes depression.
You don’t understand the full impact of the emotional and painful experiences that we, people with chronic illnesses, myself included, or the sacrifices you have to make, the dreams you’ve had to give up, unless you’ve been through it.
When you’re in a situation like that, you look for even the smallest things to hold onto. Be that a person, an animal, a favourite movie, a favourite song, or a favourite book. You hold onto it like your life depends on it because, in a strange and unfamiliar way to most, it kind of does.
Those ties help to keep you connected to reality, to not get lost in the unknown and the reality of your pain.
For me, one of my biggest links for relief has always been my writing. It gives me time where I can forget all of this, I can forget that I’m sick, because I’m not me when I’m writing; I’m the characters that I’m putting my all into, the pieces on disability, equality, media, what have you that (I hope) makes a difference to others who are in, or have been in, a similar position to me.
Surrounding myself with people who love me, who want the best for me, who will advocate for me when I am unable to do so myself. People who love me as I am, scars and all, and who will always try to understand, supporting me all of the way, through the good and the bad.
But there is another thing that, even when the hardest times hit, I have clung to that has helped me get through so much of this pain and hardship.
It doesn’t matter who you were. It doesn’t have to be a loss. Instead, try to think of it as being redirected — you weren’t on the right road the first time, and so life, as painful and unfair as it may be, has rerouted you to go down the path that was always yours and your destiny.
That doesn’t mean that grieving your old life isn’t natural. It doesn’t mean that missing and wishing that you were the person you were before you became chronically ill isn’t valid.
All it means is that your life will always have a purpose. Your life may not be the one that you dreamed of, but that doesn’t mean that you can’t make new dreams, that there is a bigger purpose to all of this.
Coming to terms with the loss of your old life isn’t easy, but it isn’t the end of the road for you. It doesn’t mean that your life can’t be wonderful and magical, just in different ways than imagined.
There will never not be some kind of journey to lead you to your ultimate destination — but first you need to let it find you.
Written by Bee Jenkins
