Friday, 4 May 2018

Going Through The Emotions: Life With Chronic Illness

I wanted to write a positive piece about the emotions I experience from living with chronic physical and mental illnesses, but it was difficult. No matter how one tries to dress it up, life with chronic physical and mental illnesses is far from pretty; the reality is you cannot dress up physical and mental illnesses with flowers and ribbons. So I could only write the truth. After many years of dealing with lupus, myositis, Raynaud’s, chronic migraine, severe gastrointestinal disorders, borderline personality disorder, PTSD, anxiety and depression, I no longer worry about trying to dress it up and make it pretty.

Lately, I’ve been thinking a lot about how I feel about my illnesses. I am currently undergoing psychotherapy and every feeling buried under the surface is being pulled out of me from the depths. It is painful. My true feelings about my illnesses are being unearthed and I am having confront them. Over the years, I had buried my feelings about my chronic illnesses in a desperate attempt to hold onto some normality. I pretended that everything was “just fine”, even when I looked and felt like death. I still do that sometimes.

Being physically and mentally ill is exhausting. So is the pretending. My illnesses pretty much took over my life and I am not the person I used to be. No matter how hard I fought against the daily tsunami of illness, it eventually overwhelmed me and I realised that I couldn’t pretend forever. The game was up, I had to stop. I had to find some way of accepting my illnesses and my life for what it is, and I had to learn that it is okay to accept things for what they are, as long as I don’t give up. Part of this battle is confronting and accepting how I feel about my physical and mental illnesses.

These are the emotions and feelings I confront everyday:


I feel guilty about everything: I blame myself for getting sick, for not being the person I used to be and for feeling like a heavy burden on my loved ones. My partner is currently struggling with the stress caused by dealing with my physical and mental illnesses, and I see the effect it is having on him. He’s not sleeping, he has frequent anxiety attacks and feels miserable. The black bags under his eyes wound me like a knife to my heart. On my worst days, I sometimes feel that my loved would be better off without me. The guilt makes me hate myself. The guilt is by far the most intense emotion I experience and it can be just as overwhelming as the illnesses themselves.


I grieve for the person I once was. My partner wants the old me back: the girl who used to party like there was no tomorrow, going to gigs and festivals, eating out in restaurants, exploring new places and generally having fun. My life was all about fun, even though I worked full-time in miserable jobs where my boss treated me like crap because of my frequent absences from work; I was either sick with my lupus and myositis, or having a breakdown, or completely falling apart, mentally and physically. I pushed myself beyond my limits and made my illnesses worse. But that is not my life anymore. I now accept that. It is difficult for my loved ones to see the old me and they are grieving too. Yes, my illness has changed me, I get that, but inside, I am still me. I’m still alive.


I am frustrated most days. If I’m having a bad day, my joints and muscles hurt so much that I have to grit my teeth all day in an effort to stop tears of frustration rolling down my cheeks. My depression is just as debilitating, because on my bad days I’m unable to leave my bed at all. On such days, the levels of my frustration shoot through the roof. I get frustrated on because I am unable to much; I can’t do chores, bathe, wash or dress myself, or do the things I love like arts, crafts, writing and reading. Being housebound by my chronic illnesses is more tolerable when I’m able to do these hobbies. I especially love reading, because it allows me to escape the realities of my life, but if I’m unable to hold a book because my wrists, I am unable to escape my prison of pain. It makes me want to stand on top of the tallest building in the world and scream.


I often feel angry about the frustrations of living with my physical and mental illnesses. I am mainly housebound, only leaving the house for medical appointments, and never on my own. This is because of extreme fatigue and anxiety. The anxiety is caused by my fear of collapsing on the street; two years ago, I suddenly collapsed in a car park and had a seizure, which resulted in a fractured shoulder and eye socket. Since then, I’ve become so anxious about leaving the house that I tremble and have anxiety attacks. I get cabin fever and feel claustrophobic being stuck within four walls. I hate this prison of pain, depression, fear and anxiety and I want to smash my way out of it. I want to throw things at the wall to watch them break apart with a satisfying smash. I want to throw chairs at the walls of my prison, or take an axe to the walls, but I don’t have the strength. Punching a pillow is said to help, but it never satisfies the rage inside and besides, I often don’t have the energy to bash pillows!


The fear I feel all the time accompanies my severe, life-threatening illness: lupus. It is the fear of the unknown, of not knowing what battle will come next, the unknown path ahead, of a life of chronic physical and mental illnesses, that scares me. I am anxious of the prospects that my illnesses, especially lupus, may present me with in the future. I am terrified of dying young. I often have days when I’m unable to walk because of a nasty flare up and on those days, I fear becoming completely disabled and reliant on other people. Lupus is unpredictable and it can get nasty pretty quickly, without warning. I often think living with chronic illness is like having a nuclear missile hovering over my head, waiting to explode at any moment.


Despite the negative emotions that accompany my illnesses, on my good days I feel hope. There is a popular quote that has been circulating online and within the chronic illness community for years that says “HOPE: Hold On Pain Ends”, and I believe that is true. I know that the good days and pain will not stay away forever, but even on my worst days, there is a tiny glimmer of hope. I know my bad days won’t last forever and I know that I will get good days. When those good days arrive, the relief and joy I feel is like being washed in a warm glow from the skies above; just for a little while, I’ve been cleansed of the fear, worry, despair, guilty, grief, frustration, anger and darkness within. I shed my skin for a new one and although I know it won’t last forever, I love this new skin and try to enjoy it while I can. 

Without hope, there is only despair. Without hope, I doubt that I would be alive today. Hope is a beautiful thing.Accepting your life for what it is doesn’t mean giving up, it means that you are staring your foes in the face and fighting back. Acceptance leads to freedom. It is okay to feel angry. It is okay to feel guilt, grief and frustration. It is okay to be scared. We can’t always put on a mask that says “I’m okay”, when you’re not. We can’t always be brave, or strong. We are not superheroes. Our illnesses may rob us of our dignity, and you can’t put a pretty dress on that. We are human and what we feel is what makes us human. Never feel ashamed for feeling the way you do.

Accepting my chronic illnesses and all the emotions that come with them will be the biggest challenge of my life, but once I start doing that, I will find myself on the road to freedom.