Rage, Grief, Jealousy, Shame and Pain

The shadow side of chronic illness

I still do not want to label myself as having chronic illness. I still want to believe, have to believe that one day I will get better. The reality is that I have been unwell or ‘sub-normal’ which feels like a more accurate term for some time now. Five years, maybe more and lots of my symptoms fall under the ‘chronically ill’ category. However I will not and cannot believe that I will ‘never get better.’

Last night was a bad night.

Yesterday morning I knew already that I was overwhelmed and exhausted, that fatigue was tugging at my sleeve. But I had a number of phonecalls with health professionals to attend to and then a therapy session that I didn’t want to miss. Afterwards I just had time to pick up some food, walk home and grab some lunch before picking my son up early from school for his weekly play therapy session.

Sadly being chronically ill seeps into the lives of those closest to you, in my case my son who alongside dyslexia and probable ADHD has a Mum who doesn’t always have the energy to run around with him as much as he needs and who has to have hospital appointments and crying fits which scare him into worrying that she might die at any moment.

Seaweed Forest, Getty Images

Back at home I attempted to tidy our chaotic front room. Throwing cushions and cuddly toys on to the sofa to make a semblance of space. Every room in my house feels like it is drowning under stuff and I have made a promise to myself to get rid once and for all of all the things I no longer love, whether they are useful or not. Old red and yellow cushions covered in rabbits and elephants, a grubby grey sofa donated by a neighbour, a console table which has never properly fit anywhere, crockery saved from my grandparents house. By 7pm after cooking, serving, eating and cleaning up from tea my legs are aching. My pelvis is throbbing and red runs of heavy pain run down both legs, I have to lie down.

Luckily my son has come back from next door early and seems relatively keen to go to bed, we listen to songs as he jumps from bed to bed (we sleep in the same room as he refuses to sleep alone), wild energy sparking out of him, we settle and then there are calls for food, his usual routine - hungry, putting off sleep as long as he can. Squirming and squishing in blankets, blankets wrapped over his head, body tussled inside the duvet cover with a hot water bottle and soft teddy monkey, I lie next to him reading two chapters and then the familiar audiobook which ultimately gets him to sleep.

Finally I can reach for my own bed. I manage a few sentences writing in my journal but my legs are throbbing and my head is swimming with exhaustion and I drop immediately into sleep. I awake in the night with my back aching deeply, there is a spinning sensation in my body, I am sweating and there is a flapping sensation in my head like a moth flapping its wings against my skull, I am wide awake and trying not to panic.

I started taking HRT about a week ago and these night episodes come less frequently, their edges somewhat less blurry than previously but they are still happening and that is scary. There is a lot of fear that comes with having a chronic illness, alongside perimenopause, alongside single parenting. Fear around so many things. What is happening to your body? Will it get worse? Will you die in the middle of the night? Who will look after your child? How will you ever make enough money to live the life you would love? Always worries about money and the wish for more, lots, lots more and what if things never get better?

What if things never get better?

What if things never get better?

This morning I wake and my limbs are heavy, they feel like tights which have been stuffed with a runny cement that I somehow have to pull out of bed. My head is fuzzy also, my heartbeat irregular. I shower and I dress and already want to go back to bed, let sleep subsume me. But there is breakfast to make, a child to get dressed, fed and to school. I cannot just stop.

I send a text to my lovely gardening client and tell her I won’t make it this morning, I have had a bad night and feel unwell. I don’t tell her that I am so exhausted that I just want to go back to bed or that I am scared that I won’t ever be able to do her gardening again. I feel bad that I have let her down. I love my client and her little garden. I feel keenly that she needs these moments of connection with me as I do with her. A cup of tea in the tiny courtyard garden talking about first the plants, her travels, my health and her memories. She is an elderly lady, who has faced cancer and grief and who lives alone, mustering up jobs and positivity. I feel ashamed that I have to let her down today.

There is a lot of shame in chronic illness. Shame that you cannot live a life like other people. That it is not possible to wake up and get on with your day, going to work, completing tasks, carrying on as normal. Shame covers me like a familiar grey blanket, on the outside of shame a colourful mask to keep the world at bay. Fully dressed, hair washed, smile on - or not, trying to look like everyone else on the school run, pretending that it is all okay because people don’t want to talk about your illness anyway. “Why don’t you just try doing something. That will make you feel better” the familiar refrain from family members who can’t see your shame.

My client responds that she has had a fall. She has fractured her right elbow and knee and I am filled with rage. Rage that I am young and she is old and I should be able to go around there and help her. Sit and make her cups of tea and talk. Go to the supermarket and pick up her shopping because she is alone and those are the things that I want people to do for me when I am unwell and afraid and I know how awful it feels to be alone and vulnerable and unwell. And I am angry because I am young and she is old and yet my body won’t allow me to do the things that other women my age are able to do without thinking.

Rage is another element of the shadow that comes with chronic illness, that comes when your life is ripped out from under your feet without warning. I am shocked by my rage when it comes because it is visceral and ugly and dark. As I enter the school gates with my son this morning, a young mum on an expensive turquoise electric cargo bike, heavy and full of her two precious children, sitting hunkered down in a carriage, softly whispers to me “can I just squeeze by” and I am immediately full of rage. Rage towards all of these mums and dads on electric bikes, wholesomely cycling their children to school, siblings squeezed in, cheeks ruddy and red.

Rage quickly turns to hatred and I am filled with hatred for all the Dads holding hands with their children, chatting about how cold it is on Venus and special spacesuits and the mums hugging, swinging their long blonde hair and all the dogs tied up at the school gates. I am scared by this hatred because it is ugly and overwhelming like a dark tarry sludge churning inside of me, breathing fire out of me and I know that deep down this rage and hatred is just covering grief. A deep, deep well of sadness flint blue and grey which fills me and envy forest green with yellow flecks is the same thing; because more than anything I want to be just like them. I want to be healthy and wealthy enough to cycle up hills with my son on an electric cargo bike. To have a partner to help with the school runs, someone I want to talk to and be with more than anyone else, someone to hold my sons hand and talk to him about solar systems and dreams.

And I have to quickly leave my son behind the wide glass doors, take my moment and run after taking him to the loo, hanging his coat on his peg, our usual routine because his old TA left and he won’t go in alone. My son has separation anxiety because he is scared that his Mum is going to die and his brain wasn’t made for school. He knows it is going to be boring and tiring and hard and he will have to sit for most of the day whilst his classmates easily complete the work which he can’t do and I have to leave him quickly at the door.

He is clutching a red and blue, cuddly crab with long legs which he isn’t allowed and for a moment he looks small and confused as I have to take my moment to run. And I am filled with rage at a school system that doesn’t know how to care for children, that grinds them down and tries to fit them into tiny boxes and I am full of rage that I cannot do more to help my son right now, in this moment. I can’t take him out and away from here and promise him something better because I don’t know if that exists or if I will ever have the energy to take him there.

Walking out of school the rage and the grief threatens to overtake me, I want to scream and I have to hold back the sobs, whisking myself out and away feeling the shame of all these emotions which are too big and messy and I put my hand in my pocket and feel for my phone which instantly numbs the emotions coursing through me. How powerful it is that we have these little numbing devices that we can carry in our pockets, how terrifying and controlling it is that we choose to allow them to take over our lives in so many ways.

Yesterday my ever present phone pinged with a whatsapp message from one of my oldest school friends, part of the whatsapp group we use to keep in touch even though some of us haven’t met in real time for years. My friend shares her relief at having had a day alone as it is the first time her daughter has joined her class in six months and her husband is now at home taking over those tasks so she can work. I congratulate her on her time alone, am pleased that she has found a breather from constant caring, knowing how hard that it is.

“How are you feeling?” she asks. “

Oh a bit better now I am taking HRT. No longer sucidal at least!” Smiley face to make that sentence more palatable.

Because that is another truth of chronic illness, the deep dark depression and anxiety that sails in quietly on waves of pain and fatigue. That takes root like ribbons of terracotta and black green seaweed dragging you down to the ocean bottom so you can’t breathe as your visions of a healthy life drift far from shore. The desperate desire to keep up with everyone else, be able to walk, run, talk, go out without fearing the repercussions the next day. Not knowing if you will wake with a deep dark primordial ache from your eye sockets down to your little toe bones or dizzy and numb and disconnected from the world.

And there have been moments when I have thought that I do not think I could bear a life full of so much pain, I would rather not be here. Though I never make plans. I couldn’t do that.

Another friend shares that she is going to have tests for fibroids and hyperthyroidism.

“Are you fatigued?” I ask.

“Not really” she replies “considering I work full time and commute in” to London, the big city, she is a high flying lawyer. And I feel it like a kick in the teeth, whether it was there or not, the condescension in that sentence. ‘I work full time and I am not tired and what do you do?’ The feelings of not good enough, of somehow second rate because what do I do except float around at home, trying to survive and keep my head above the burgeoning waves whilst around me the world carries on.

Like my brother who barely talks to me now and when he does reminds me “we are going into a heavy period at work” and his wife “will be teaching at the university” so it will be very busy. And I am resentful of him and the people who work and of his country house that he is selling and the building work they are doing to transform their cavernous garage into an annexe so “people can come and stay.” And of all the years of earning that I have missed as a single parent with a child that doesn’t sleep and now this, a body that I can no longer trust that just wants me to stop maybe because of trauma that lasted a long time and happened a long time ago.

It tastes bitter like sloe berries straight off the tree, a deep dark forest where I could get snarled up in the Blackthorns and the Hawthorns and the rotten boughs of decay.

For this is the shadow side of chronic illness, the dark and the deep side of it which many people don’t see because it is hidden out of view, obscured by that blanket of shame and of longing.

I come home and I sit and I sob in my chaotic front room, tears obscuring the mess from view and I sit down and I write, words streaming out of me on to the page.

Then it is time to go and see the small and strong and gentle bodytalk specialist who has been helping me through. I describe how the HRT is helping but I feel like it is pushing my body too much, beyond its true capabilities and we discuss natural progesterone and estrogen dominance and that all makes a lot of sense to me. I lie on her couch as she taps away asking my body questions and it answers with shame and rage and she reminds me that rage when set free is a catalyst for change. It has an energy, creativity it can be a positive force. She reminds me that when I first came to see her I was deep, deep in despair and hopelessness and I have come a long way even if it doesn’t feel like it, even if I can’t see it.

And I remember my therapy session yesterday and the colourful crocheted blanket that I bought to remember the little one inside of me who is full of colour and energy. The blanket which my son made into a cape and snuggled around his face to sleep as we lay cuddled up in his bed. And his ukulele teacher sends me a whatsapp recording of todays lesson and the song they made up about the ‘Christmas Crab’ and my son is singing gleefully in the recording, making funny voices and laughing.

Outside the school gates at pick up a friend - also in a difficult place - comes up to me and we just look at each other and grunt and hug and I say “Kevin and Perry” and we laugh and we can’t stop.

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