I’ve had a real struggle the last two weeks.
I’ve had Influenza A for a while now and every little action has been harder than it should be. Getting up is hard. Working my main job is hard. Working my second job is hard. Housekeeping is hard. Relating to people is hard. It’s all been harder than usual.
On top of the normal amount of fatigue I get with Crohn’s – the additional exhaustion from the flu virus has worn me right down to an exposed nerve – and perhaps that’s why my head has jumped to such a dark place.
As someone with a chronic illness – for the most part I am always in pain and always fatigued – most chronic illnesses have that in common. The specifics differ – sure. But for the most part. Pain and fatigue. Fatigue and pain.
So, this week when I hear ” [insert name of person here] said you aren’t really sick because you don’t take as much [insert name of painkiller that person thinks will make them sound tough here] as them”. And you know – if it had of stopped there I probably would have smiled and though “we’ll you’re both fucking idiots – one for saying it and the other for repeating that horseshit”, but there was more. “[Insert name of person here] can’t work because they are too sick – so they said if you were ‘really’ actually sick, you wouldn’t be able to work either.”
That [insert name here] has actually been three different people, sharing their opinion of my health with three other people who found the need to share it with me. Now, my nerves are thin – because I’m particularly unwell right now. But I managed to not react. However I still got really hot from having this fed back to me. Why should someone say these things about me or to me in an effort to make me justify my health concerns? And why have I felt compelled to write about it? Can I blame the extreme lack of sleep? Or the overpowering fatigue? Or maybe it’s been the very turbulent last 3 months where 98% of my family turned their back on me at the only one time I have needed them in years? Maybe – I’m just sick of illness being made into a competition? “I’m sicker than you so I win more sympathy!” Fucking have the sympathy – and while your there can you fix what’s wrong with me so I’m healthy?
These people WAN’T to be sick. They ENJOY the attention – and it has just grated on me – particularly in the last few weeks. I don’t tell social media the exact specifics of what’s going on or how I feel on a given day – does that mean I don’t struggle? No, it means I know EVERYONE struggles – and that everyone needs to get on with it to get from Monday to Tuesday. I don’t enjoy the attention I get from people knowing I’m chronically ill – that’s why for the most part I write this story anonymously and for myself. I hate the way people look at me – either like I’m a bird with a broken wing – or that I’m making it up because I still have to go out and earn an income… clean my house… do the fucking shopping… because if I don’t – it doesn’t get done. There are very few people who don’t look at me in either of those two ways – and that’s why, a few years ago now, I stopped talking about it altogether. Because I don’t want or need sympathy or that look of disbelief. My new workplace doesn’t even know – and it’s my sincere hope I never have to tell them.
I wish all this was a lie – that it was in my head… that it was made up. In fact I still have that same fantasy – the unhealthy one where I walk into the specialists and he tells me it’s all a mistake and I can be cured with this one magical pill. That is what I want. If there was a magical wish granting being out there – that’s what I’d ask for. Not for money, or riches, or fame. I just want what I have to be able to be cured – or even managed effectively. I want to be one of those normal people that others come to with their health stories – I want to nod and console without the faintest idea of what they go through. I want to have a body that isn’t constantly at war with itself.
I am not going to go into details of my pain relief regime – because first of all – totally private and frankly none of anyone else business. I find it almost beyond disgusting what someone would make comment on it – but the fact 3 seperate people have in the last few weeks – I find gutting and mind boggling.
I do want to address the comment about “not being sick because I go to work”. Am I better off than some of the Crohn’s and Colitis community – without a doubt, absolutely. Since my surgery in 2013 I’ve had fewer complications – and for that I’m truely thankful. But I still have complications… I still need to leave 2 hours before I start work because I will need to stop at least 4 times along the 35 minute journey… I still carry at least one spare set of clothes with me at all times… I still have days when my alarm goes off I lay there praying that it’s the weekend and that I just hit the alarm by mistake… Here’s why I get out of bed: I have to. Pure, simple, easy. There is no one in our life that can or will help with our obligations – much less, would I ever ask, knowing that every single person has their own struggles, their challenges. I am part of a team of two people – if I just stop (like I really want to some days) I have let my team mate down. He is the one person I NEVER want to let down. Do I want to be at work, scratch that, do I feel ‘well’ enough to be at work? Absolutely not. I haven’t felt well enough to work full time in over 10 years – since before my illness even had a name. If I don’t drag myself out of bed every morning, get in my car and smile like I am normal and healthy – well – a few of those burdens I talked about earlier fall on my partner alone. We’ve always done everything alone – and that’s never going to change. Why should it? Just because I’m sick…? If my ‘friends’ who are talking this shit about me, won’t even help by listening without judgement… who would drop everything to pay our mortgage, or fix our appliances… help us with new cars….? Fucking no one. Haha – how about this…. no one will even take care of our dog for a single night so we can stay at a friends…. a dog… for one night. That’s exactly how much help we get in life. But that’s ok because that’s exactly the amount of help we expect – so it’s exactly the amount of help we need.
I have taken a big step back from the social side of life… friends… family.. all of it… and people sit there and wonder why. They literally ask me, why? Why? Because I can’t tell my story without being judged. I am judged by my friends and family – constantly. I am told that “I’m not ‘really’ sick” constantly. And perhaps worse still – I have people running around telling me what these people say about me behind my back – even when I take myself out of the equation so I can deal with my very complex life without being bombarded by other peoples opinions of what I should look like, how I should feel, what I should be doing – the list goes on.
I can’t cope. I can’t cope with they way I’m treated. Not when I’m trying to pay mortgages, take care of houses and plan trips so I can have a life in between. There isn’t room for all of it.
All of that’s always followed up with “then you’re selfish”. Am I selfish for trying to take care of my own mental health? Am I selfish for taking care of my own business and not expecting anyone else to? Am I selfish shutting down when all I ever get when I’m open about my situation is criticism over stupid shit like I don’t take enough pain killers or I work a lot for a sick person?
Have a good, long hard think. Do you know a spoonie – do you do this to them? Do you think like this about them? I guarantee you THIS is how they feel. Disengagement is such a wide spread problem with the community battling at least one chronic condition – I have to sit and wonder if this is why – when the only person who sits and listens to how I actually feel charges me $215 an hour.