“I get you more now, your like an Island of one…. You had to be.”
This is so messy. I debated for a long time whether to put it down – but I feel like it’s been rolling around in my head for a while so perhaps it’s a good time to get it out in the open.
One of the hardest things about being chronically ill with an invisible illness – is for the most part (unless your about to go to the hospital) you look ok. The only issue I have that you can see is the rash created by Sweets Syndrome. And it looks pretty innocuous.
I look like a normal 30-year-old. Except there is a war going on inside me.
I was diagnosed with Crohn’s Disease in 2010 – after a very long battle with a mystery assailant. When it was found – it was quite bad – lots of complications. I was relieved when I got the diagnosis then overwhelmed when I found out more at my next appointment almost 9 weeks later.
That is the point you typically need to start talking about what’s happening – it coincides with many of the people in your life not being able to handle what’s happening. Acquaintances drop off and I’ve learned now that all that was for the best. My belief was my family would gather around me and help me get through everything that followed. That didn’t happen. In fact my parents and brother (at least) went around telling the world (we’re talking complete strangers – people that came to visit their Christmas Light display) that I was a hypochondriac and I (and this is a direct quote) “like to make health problems up to get attention”. I know this happened… because my family said it to my best friend, who debated for a long time whether or not to tell me what was being said behind my back. Was it cruel of him to tell me? Absolutely not. I no longer talk about my heath to most of my family – because I simply can’t handle the fallout.
Telling a chronically ill person, or broadcasting it, that they’re not actually sick is a cruel blow. Having your FAMILY, the people who are meant to be there for you no matter the weather, do it to you. It’s heart breaking.
Everything they’ve done to me since 2010 – has broken my heart. And I’ve finally come to the understanding that there is no way of repairing it. They can’t take back their words and I will NEVER trust them with my personal business again as long as I live. It’s like an open wound that’s festered…
My parents never physically abused me. They did a lot for me – I am THANKFUL for what they did. But when the chips came down… and I needed them to gather round and just listen to my story… they started spreading these vile rumours about me. I feel like in those few moments where I changed… they pushed me to the side… so I changed away from them.
My husband said to me after my last Cardiology appointment, “you’re not the same person you were when I first met you. You just attack things now, you don’t leave them to linger… you commit to it and you fight”. I am not the person he first fell in love with. She was trusting and loving to most everyone. She was terrified of medical procedures. She let her fear dictate what she did and when she did it. I’m still scared of stuff – a lot of stuff. But that fear is fuel now… not a deterrent. It makes me want to do that thing 100 times more… and for the most part I do. There has been a trade off though. I feel cold to the people that have mistreated me over the last 5-6 years. Not hatred… I don’t think hatred… more…. nothing. I feel nothing. I don’t rejoice in their victories or cry at their challenges. I’m just numb. I am numb to my mother, father and brother – and I don’t know if there is anything that can be down to undo that. I know how I “should” act – how society wants me to act – and for the most part I go through those motions… but do I want to? No. Do I feel compelled to? No. I have no strong feelings, no empathy… nothing. I feel nothing.
I was speaking to my best friend last night, I told him a few days ago how I felt, it’s a secret I’d been holding onto for a few years… possibly from the point that I sat in my parents car after a barrage of tests and my father screamed at me in disgust, telling me how selfish I was for not paying the $5,000 to have my eggs frozen and have children. That was the last time I involved them in ANY medical concern. I went as far as to tell them not to see me when I’m in hospital… the last few times I’ve not even told them… or pretty much anyone about my admissions. That’s when I started to go cold. Little by little they said and did things that made me colder, and colder until… that side of me was just… gone altogether. I told my friend that this made me a bad person – he argued the point, saying I feel compassion for people I haven’t even met… I still think it makes me a bad person despite his protests. You should want to give your own life for family, right? Last night he opened the conversation with “I get it now, I get you. You’re an island of one. You’ve had to be”. I got strong because I had to be. I cut myself off because I had to. I became cold to survive. It is true. But that doesn’t make me feel any better about not feeling anything.
I really want there to be a message in all of this rather than it just being a story of how I’ve slowly de-humanised over the last few years. But I’m not sure there is one. I want to get on my soap box and say “healthy people don’t say this and don’t say that”. “Everyone is fighting a battle you can’t see – always be kind”…. it’s bunk though. Because who’s reading this? People in a similar situation to me. Healthy people would never read this blog because knowing about these illnesses means you have to make a choice about how you handle them. It’s a hard choice for a healthy person – and 8 times out of 10, that decision is to ignore and walk on. Can I really blame them? I want to. There are days I want to wake up and seeth with hatred over the fact I have to work so hard to get my body to do simple things and it comes so easily to others.I want to hate people for using me when stuff happens in their life then running in the opposite direction or talking over me on those few occasions that I need to unload. It’s easy to hate… but I’ve found it’s even easier to just switch off. Put a wall up. Circle your own wagons and deal with your own problems rather than being let down by others who can’t react the way you need them to.
I am an island of one. I’ve had to become this way to survive. But I don’t know if I’m a “good” person anymore. I don’t know what a “good” person is. All this is innately human though, isn’t it? After all millennia of evolution has instilled in each of us “Just Survive Somehow”. And this, this is how I survive.