To the Chronically Ill Mother

Yesterday I was babysitting my niece (1) and nephew (3) all day. I loved hanging out with them, but I got a new insight into what it’s like to have kids when you have a chronic illness.

Children never stop. Ever. They’re little balls of energy, addictive and adorable, but oh so exhausting after a while! I can honestly say that the longest and most stressful day at work never amounted to a full day looking after little kids. Not in the sense that it was stressful, but just how much it takes out of you.

Now, my glimpse at life as a mother was tiny, but told me so much. I probably managed to go to the bathroom once all day, and had to eat quickly while they were distracted with their own food. I cooked dinner with my niece in one arm while trying to allow my nephew to help prep the veggies without hurting himself and without actually letting the food burn. Then I gave them both a bubble bath after changing the nappy of my 1 year old niece, that was so full that I just couldn’t believe such a little human could produce so much poop!

The noise – they were ‘chatting’ and making noises all day, while constantly demanding attention and forever moving. They wanted to go outside, then inside, then outside. Then eat, poop, play, watch TV – rinse and repeat!

For all mothers out there – I have the utmost respect for you. I can’t wait to become a mother myself, but man I could see the struggle you all go through on a daily basis. Any man that says “you were at home all day, why didn’t you get anything done?” – I will personally kick you all in the balls.

Now, to the mother with chronic illness – that’s a whole other level of respect I have for you! To the mothers suffering with an autoimmune condition, chronic fatigue, diabetes, arthritis, even cancer – you are an absolute SUPER MUM! To suffer through daily fatigue, pain, nausea, digestive issues, chest pain, dizziness, insomnia, and a whole other gigantic list of issues, and STILL be able to push through all that and look after your children in the way they deserve. You deserve a god damn medal!

You don’t have time for yourself, not even a second. Not when your little babies are demanding all of it. You put yourself second ALWAYS, and I think that takes incredible strength. Self care has probably become a distant memory for you, but I still feel like it’s so important, no matter your circumstances. You need to look after yourself, to be able to look after your little ones.

For everyone else out there without children – I think it’s important to offer some support and have some more understanding on what mothers in general go through, let alone mothers who are chronically ill. Offer them an extra hand, watch their kids for half an hour while they shower and wash their hair – every little bit helps. Offer them the self care time they so desperately need. This goes for all mothers, not just the chronically ill.

But pay extra attention to those with chronic illness or pain. Extra attention to how they’re coping mentally as well as physically. I myself spent the entire day today in bed recovering, and my condition is no where near as severe as some others.

To the chronically ill mother – I see you. I think you’re incredible. Please don’t feel guilty for something you cannot help, please see that you’re doing an amazing job and pushing through so much more than anyone should have to. You’re a good mother and you’re a strong woman.

Feeding the Stigma

This is entirely my fault. For two years I have been suffering with health issues and chronic widespread pain, spending thousands of dollars on appointments, tests, medications, hospital visits and surgery. Unable to work full time or have a normal social life.

And apparantly unable to let my own family in on this huge life changing illness. Whoops! 🤦‍♀️

I made an assumption. A stupid one. You know what they say when you assume, right? I did that. I made an ass out of u & me. Or them and me, if you want to get technical.

My mum and dad knew most of the details, so I had just assumed they would have let everyone else know. I kept the details close to my heart, not wanting anyone to know how much I was really struggling, but hoping my parents would give them the general gist.

Apparently they didn’t. And so, two years after this all started, my brother and sister-in-law asked me why I had resigned from my job and what was going on with my health. When I mentioned my migraines, my possible Lupus diagnosis, my brother asked if that’s the reason I go to bed insanely early, like a light bulb just went off in his brain and everything suddenly made sense. Because guess what? Everything suddenly DID make sense! When you actually explain the facts to people, first hand, everything falls into place. Funny that!

Now, after that conversation, I realise that I’m guilty of exactly what I’ve been ‘preaching’ against! Not talking openly to my own family for fear of judgement and simply hoping someone else would do my dirty work hasn’t done me, or them, any favours. Sure, judgement is a part of life. So why are we so scared of it? I think that’s a hard one, because we don’t want to know the people we love the most don’t understand what we’re going through. That’s so damn isolating!

But they didn’t judge, even if they didn’t fully empathise with my situation. They just wanted to know, to understand. Because they’re my family, and they love and care for me. It seems so crazy to me now that I didn’t trust in that.

I’ve heard people say there’s no stigma with chronic illness, only with mental illness. But I disagree. There is a stigma, if there wasn’t I wouldn’t have been so scared of judgement. That fear had come from somewhere, and it caused me to hide what I should have been sharing as abundantly as possible. The stigma is based around chronic, invisible, undiagnosed illnesses. Am I making it up? Bunging it on?

Every time someone asks me how I am, genuinely wanting to know if I’m okay, my response is always “I’m okay. Same old.” I kick myself every time. What does that even mean?! Same old? REALLY? Just tell them the truth, that I’m struggling with migraines and I’m tired of pushing through. That I’m desperate for a break. That I’m trapped in a body that’s constantly in pain and all I want to do is live my life. That I HATE that I had to quit my job.

THAT’S the truth I should be telling. So why is it so difficult? My fear is damaging not only to myself, but to everyone else.

I’ve been totally honest with all these strangers via my blog – but not with my own flesh and blood. Maybe it’s easier to face being judged by strangers, than by those we love. Maybe it’s less scary – less hurtful. But I am causing harm nonetheless. I am unintentionally feeding a stigma.

Well… No more. I AM SICK. I am a barely functionally, chronically sick person. I go to bed at 5pm because I’m bone achingly tired and I’m trying to beat my migraine by going to bed before the pain gets too bad. I avoid social outings because I’m scared I’ll have to leave early which either forces my boyfriend to have to leave early with me or forces me to either explain the truth to everyone or make up a lie. I’m not sure which is worse. I can’t work full time because I’m physically and mentally exhausted from having to push through daily pain. I’m terrified of doctors visits because I’m tired of being told that they can’t figure out exactly what’s wrong, and I’m embarrassed every time I have to explain that fact to everyone else waiting to hear my diagnosis. I’m dead broke, partly because I can’t work enough and partly because doctors, medications and tests are SO expensive. I hide my pain and fatigue until it’s really bad simply because I’m tired of complaining. I hide pain from my own boyfriend who just recently said “how come you don’t get migraines on weekends?” Ha! Well, I do. I just medicate more and push through it more so that he won’t see the full extent of how broken his girlfriend is. Even though I know he’d understand, I’m scared that maybe one day he won’t anymore. I work every day to protect myself both physically and mentally.

I’m a sister, a girlfriend, a daughter, a friend. I’m a person – and I’m chronically ill. Welcome to Laura in real life.

“Chaos cannot claim everything, you know…”

It’s surprisingly VERY rare that I read a line in a book that speaks to me (especially since I mostly read fantasy novels.) But I finally found one!

“Chaos cannot claim everything, you know – there are always objects and points of stability in the worst of it.”

I think this is an important one to note. Not just for those who suffer from chronic illness, but for everyone. We all have chaos causing havoc in our lives – we all struggle from time to time. But there’s always that point of stability in the worst of it, if you just look in the right places.

My points of stability aren’t hard to find. They’re in my life every single day. Making me smile even when I don’t feel like it, making me laugh, making everything else feel small in comparison. Making life so beautiful despite all the shit in it, in all of our lives.

Like most people, right from the get go things haven’t always been simple for me. I was born with collapsed lungs, so already not off to a great start! I suffered viral meningitis as a young child, needed my first surgery when I was 4 and my second when I was 9. Things steadied out a bit as a teenager, though I did suffer PTSD and anxiety.

It was turning 19 that really started to cause the most health issues, when I had my first ovarian cyst. It was a huge one, causing endless pain until I finally had surgery. After that, at age 21, I had surgery for appendicitis – it was chronic and came on slow, over 2 months. Don’t let them tell you that isn’t possible! Then came my Endometriosis diagnosis at age 23, A very complex form that has required surgery almost every year since. THEN, in 2018, arrived my mystery illness, still undiagnosed but looking more and more like a mild form of Lupus.

Yes, none of that has been easy. But all of that made me who I am, and taught me one vital lesson… Appreciation. Appreciation for every simple and beautiful moment that brings a smile or a sense of peace and hope. Appreciation for every moment I have with those I love. Appreciation for every time a friend checks up on how I am, or my boyfriend cuddles me until I fall asleep when I’m not feeling well.

Just little things – little things that add up to a very full heart and a life full with joy. My people always have been, and always will be, my points of stability.