You see me laughing and playing with my children, niece and nephews whom I love with all that I have, but what you don’t see is the effort. That effort soon became mastered, mastering pushing past my pain because the importance of creating memories for the amazing children in my life once I am gone is more important than my ill health.
You see me offering a helping hand in the kitchen at family events, but what you don’t see is my back aching, my joints swelling and my head pounding. The anxiety and focus it takes trying not to drop a plate is enough to push me over the edge sometimes.
You see me joking around and laughing because I am happy, and I am happy but what you don’t see is my heart pounding so hard against my chest that it heavily takes my breath away.
You may even see me dance and singing at an event or on social media, but what you don’t see is the planning it takes to attend and to show up because I know that one night can set me back when the aftermath of that one fun night could take me weeks to recover. How I’m so swollen that it hurts to walk whilst my self-esteem lessens. How breathing feels extra hard and how the consequences of having a few drinks or a simple late-night compared to usual leads to suffering for weeks, and more often than not it leads to another hospital admission.
You see a happy mother, a loving wife and someone who has made it her mission to support our community. These are true, but what you don’t see is the swollen hands, the dizzy spells and the energy leaking out whilst I’m putting together another package. Maybe the next package will be my last I often think to myself.
What you don’t see is how hard I’m working to create my legacy, because that matters to me deeply. For when I am gone I don’t want to be remembered for my messy home, the countless days without showering, the early school pick up’s because I can’t bare the pain of sitting in the car during peak hour traffic. Ordering take out because I had too little energy to grocery shop or too little energy to stand over a stove. I don’t want to be remembered for how I let my husband and children down, how I have let myself down. The guilt of how much my health effects my family. How I’m so tired that I forgot to reply to my messages and I forgot to buy fucking milk, AGAIN.
I want to be remembered for the good that I have done, for changing lives, for helping others and for making people smile. One day, I won’t be here and who knows, that ‘one day’ could be soon. The memories I leave behind are all that I can control and they are constantly in the back of my head when making life choices.
I’ve grown so use to acting like I’m okay for the comfort of others and to avoid judgment that I legitimately don’t know how to act like how I feel anymore. Only my husband sees it, the one person who I can be my true self with.
The more I discuss this with my friends who suffer from disabilities the more I realise that people with chronic illness have mastered acting. They spend too much time trying to convince people that they are not lying whilst also trying to mask their pain and illness. The judgment and stigma is so deep that I have never used my disability parking permit, even on my worst days. Whilst I drown in a body that continues to betray me, you see a smile, compassion and a woman driven by love and the need to help, but you don’t see the all too consuming guilt that follows.
If you’re reading this and you think this is directed to you, it probably is. You only see one side of me, but have you taken the time to know all sides of me?
You think I don’t hear the whisperers. I do.
You think I don’t notice you leaving the table when I come to sit. I do.
You think I don’t hear the silence when I step into a chatty room. I do.
You think I don’t see the giggles while you stare at me. I do.
You think I don’t hear you pick on my weight changes and appearance. I do.
You think I don’t know what you say about me. I do.
You think I don’t notice who checks in. I really fucking do.
My silence is not a weakness. It’s not ignorance, is not fear of you nor is it unknowing. My silence is knowing all, its knowing too much and being too aware. But it is also my resilience, my worth and my strength. My silence is me being the bigger person because anyone can treat someone like shit but it takes real strength and hard growth to sit back and pick your battles. To know your worth, to value yourself so deeply that you no longer care to defend yourself to people who do not value you.
“I stopped explaining myself when I realised that people only understand from their level of perception”
When it comes to my health battles, I’ve had people question my truth, talk about me and dehumanise me in an attempt to validate their hatefulness and ignorance. Which is ultimately their own deep-rooted insecurities projecting outwards right? I’ve spent countless weeks in the hospital without even a text to check in on me and that has been the biggest wake-up call for me personally.
I now distance myself from people who I know do not value, appreciate or make time for me so I guess I am an easy target for them now. They assume I am brittle, quiet and vulnerable but there is strength and knowledge in retaliating with kindness, in quietness and simply by observing.
And one thing I have learned through the shitty behavior of these people, it that it has absolutely nothing to do with me and everything to do with them. They are challenging my truth behind me because they are too afraid to face me. Their perception and my truth are two very different things and I truly think deep down they know that, but they are uncomfortable and too insecure to ask questions. So instead, it is easier for them to assume and make up scenarios in their heads, and not long after I am quickly labelled a liar, a fake and so much more.
Whilst I don’t feel the need to explain myself to anyone, I do want to put this to bed once and for all.
My illnsess maybe be invisible but your mean girl menalitly and ignorance isn’t.
Consider these pictures below a middle finger to those who have challenged my truth. To those who have made it their mission to spread rumours and have gone out of their way to tell others that my very real conditions are “fake and made up”. To those who have labelled me as lazy, even though I push through my days even at my worst whilst you are incapable of functioning when you have a general cold. To anyone who has ever spoken down to me, questioned me or who has purposely tried to hurt me. Keep in mind that the reports attached below are not updated, there is a lot more to add to the list and you bet I’ll be sharing more in June when I have my next operation, an operation where I will be recovering in the ICU, but it must be fake right?
What I live with isn’t like a general cold that has the same symptoms for everyone. It’s not an infection or a rash that generally heals by the same antibiotics for each person. This is not like a cancer. There is no staging, there is no magic cure, there is no time frame. When I had cervical cancer I knew every option, every possibility and every next step. This is different…there is no cure and there is no hope.
This is life long. It’s unknowing. It’s unpredictable, it’s forever and it’s truly fucking lonely.
Have you ever written a goodbye letter to your Husband and kids just in-case something happens to you? A goodbye letter to your husband telling him how you wish for him to live on without you and your wishes for your children’s care and future, just in-case? Because that “just in-case” is a very real possibility?
Because you know at any given moment you could have a stroke or your heart will give up on you? Think I’m being dramatic? Just ask any of my specialist. Nothing about this is dramatic, it is reality. It is my reality.
Are your kids and husband aware that if you’re unable to speak for yourself, when the ambulance gets to your home they just have to open your notes in your phone that are updated daily with the exact time and dosage of the meds that you took today. Notes with your medical history along side your most recent operations, allergies, current medications and contact numbers for the countless specialist that are under your management?
Do you go to bed scared you won’t wake to see another day? Scared that your kids will find you dead? Scared about how your husband and kids will cope with your passing? Obsessively fixated on the memories that you are to leave behind? Scared sometimes to even be alone with your kids when your symptoms randomly worsen?
Because I have. I still do.
So if you know someone who suffers from an invisible illness and until you have lived a life of not knowing if you will make it to tomorrow, maybe try being supportive. Someone who is suffering does not need your pity. They don’t expect you to understand what you can not feel, but do not fall victim to ignorance. Ask questions, google their conditions, find out information, ask if they need a friend to go to their appointments with them. Make an effort to educate yourself so that your friend who is suffering knows that you’re at least trying to understand. Simply just be there to support them, to listen to them and to hear them. Check in on them!
Here is a tongue twister for you..
Why should the one who is suffering have to suffer further simply to avoid a type of suffering that other people put us through?
Ignorance is not bliss my friend, your ignorance could quite literally be the difference between falling down or moving forward. No one deserves to go through this on their own so make it your mission to check in on your friends today.
And to those who have tried to drag me down to their level,
I’ve spoken my truth, I live my truth, I will continue to speak my truth and I will never be silenced based on another’s perception of me again .
Whilst I sit proud as fuck high up on my horse, I want to know.. did you speak and live your truth today?
– Ann Toscano
