This is something I rarely hear people talk about, and I didn’t think it’d affect me quite honestly. But here I am, poor cos I’m chronically ill… Cool cool cool.
It’s actually really hard to write about, because in 2021 capitalistic lyfe, we tend to measure our value by our productivity and earning potential and I hold a lot of shame around this. #InternalisedAbleism
We’re all out here aiming to have awesome, independent GirlBoss energy. Working 60 hours a week for a 40 hour salary because that’s what it takes to be seen and succeed in getting the ideal career progression.
But some of us just can’t… and even though I don’t necessarily want this hardcore career woman life like I definitely used to, I’d quite like to just support myself in the way that it feels like I should be able to.
As a lot of you would know, if you’ve been friends with me a while, or reading this blog a while, but I was very sick at the end of 2018/start of 2019. It turned out to be an undiagnosed rare parasite and an inflammatory bowel disease, because I’m gangster like that.
But before I was diagnosed, it was the most awful, physically and mentally painful experience of my life where I definitely thought I might starve to death within the year, never being able to eat my favourite foods again. I was working full time although extremely physically weak and fatigued, trying to gain weight and maintain any strength with my PT. My brain was slow because… well, I was starving, so I was also freakishly obsessed with food in a survival instinct way.
I was figuring out foods/drinks that were exacerbating my symptoms, and what foods were safe, juggling medicines, supplements, appointments, researching my symptoms, plus the side issues like how I was getting scurvy. I was maintaining my friendships (kind of) and my relationship (it was rough for both of us). And you can’t forget the general joy of living with diarrhoea, haemorrhoids and painful bloating for months (hot, I know).
So of course I was depressed AF and life was awful for months.
This all crashed down around me super dramatically in November 2018 when I have a full nervous breakdown at work and had to stop working immediately for a couple of months. I spent that time dissociating, crying, and trying to stay alive and get diagnosed
I have not been the same since.
It broke me.
Even after getting diagnosed and all fixed up. And even though I’m back to (my) normal. It’s like my neural pathways have been rerouted and I just can’t operate the way I did up until November 2018.
I haven’t been able to work full time for two and a half years. And it’s very hard for me to explain how much I cannot stand this.
I feel like an absolute failure.
I’m surrounded by successful, functioning humans who work hard, make money, and are generally doing well for themselves. And although I know that we all have our shit, I don’t really see many of my friends struggling to support themselves in the very basic way of just covering costs with a bit of disposable income.
I used to be on a pretty decent salary. One that meant that I didn’t have to worry about my bills, I could eat nice food, spend my money in a pretty disposable way, AND put some in savings so I could travel and spend my leave doing nice things. As if I wasn’t living in a pretty carefree way anyway…
When I got back to work after my breakdown, sometime at the start of 2019, it was immediately pretty clear I couldn’t work full time. So I worked 20 hours a week and that seemed pretty manageable. But that put my income below the living wage.
I’ve been living in deficit since then, but it was manageable because of the aforementioned savings.
It just meant that I had to watch my holiday money slowly whittle away to nothing. Then I left my job in a restructure at the beginning of 2020 and got a decent redundancy package which took me to the end of the year pretty effectively! Considering I couldn’t work due to Covid fun times.
And I’ll be honest, I’ve been a lucky gal with a lot of supportive people. I’ve dated financially supportive guys. My parents are able to help me. And I have many people who help me out in their own ways which I’m ENDLESSLY grateful for.
But I’ve literally come to the end of my self-sufficiency. A solid two years of living off my own nest egg while unable to work full time that I would have MUCH preferred to spend on holidays or kept for those unexpected costs that come up now and then.
I haven’t had a real holiday of my own since Mexico in 2018 because I’ve just not been able to afford it. Or unemployed. Which isn’t a holiday btw, it’s awful.
I think I’m in denial
It’s hard to admit that I can’t support myself.
It’s actually really embarrassing and humiliating to have to explain to people all the time that I can’t work right now cos I keep having breakdowns since those gut issues in 2018, plus the PTSD that is also following me around.
Me not being able to work doesn’t sound right? It doesn’t sound like me? It barely sounds like the truth cos when you see me, I think I look like a fairly functioning person in public? I feel like one a lot of the time tbh.
Except for all the anxiety and depression and dissociation and flashbacks and panic attacks.
But I don’t tend to cry in public, so how would anyone know that it’s real?
I end up feeling like I have to prove my suffering to anyone who questions my situation because it’s really hard for people to take at face value that I just CAN’T work right now.
And it’s not because I’m lazy. It’s not for lack of trying. It’s not for lack of wanting to.
It’s just my unfortunate circumstances and I wouldn’t wish it on anyone.
My chronic illness and how it affects me is out of my control
People have seen me slowly deteriorate over months or years undiagnosed with something rare twice now, with the completely reasonable fear that I was going to die.
They’ve seen me move onto a monthly, lifelong treatment of antibody replacement therapy because my immune system doesn’t work.
They’ve seen me diagnosed with a lung condition that requires constant management, and an inflammatory bowel disease.
They’ve seen me get all sorts of weird, unexpected illnesses and get hospitalised for sepsis.
They’ve seen me go off work for a couple of months because of my health conditions. Go to 20 hour weeks because of how my body and mind just can’t handle full time.
They’ve heard about my traumatic life experiences that have lead to PTSD and panic attacks.
And are surprised that I can’t work right now?
I don’t understand what about this situation isn’t a natural progression of a pretty fucking rough 10 years. I was a sick child and teenager and it only declined from then. I’m now in my 30s and haven’t died yet, no matter what my body does to try kill me, or what men in my life have wanted to do that for me. In fact, it’s its own feat that I haven’t done it myself if I’m honest.
I think I’ve done amazingly to come this far at all and that I’m alive and functioning in any borderline normal way.
I did not choose this life.
If anyone remembers me before I went to the UK, I was working two jobs and was freelancing for multiple people at the same time for a few months to save up. When I got back I was working two jobs to make up for the money I spent travelling.
I’ve spent a lot of time doing 60 hour weeks, working overtime and on weekends at normal jobs 9-5 jobs, or working bars till 5am. Juggling side projects and full time jobs.
Even before I was diagnosed with my immune deficiency, I traveled, worked, and lived life while constantly ill with things like bronchitis, laryngitis, sinusitis, and even that time I kept working from home even though I had pneumonia and was coughing up blood (and was narked on by my friend and forced to stop 😅).
I don’t know what about my past suggests that suddenly I got lazy in the last couple of years and decided to be a bum just for funsies.
This isn’t unusual for chronically ill and disabled people
I know that a lot of people with my immune deficiency can’t work full time due to fatigue and illness.
And the world isn’t exactly set up for us either. If I am only capable of working 20 hour weeks, then I’ll likely earn under the living wage… and, well… that’s just how much money I’d earn. A non-living amount.
If I can’t work at all, I can get Jobseekers and a few little allowances and stuff, which means that I’d be living on about half of the NZ living wage.
If I was never able to work again, and I got a serious partner, I’d no longer be eligible for the benefit. So I’d end up being fully dependent on them, assuming they work full time. Making any potential future partner of mine my potential carer, and making me fully dependent on them.
And if you know about my past abusive relationship and how he used finances to control me, you’d probably understand why the thought of that is terrifying, and just shitty in general because… well surely it’s obvious why I’d want to have my own money. Cos don’t we all.
I don’t want children because I don’t feel I could handle it at all, health-wise. I’d probably just get crazy sick and die tbh. I can’t even handle a job, and people are out here doing both?! Couldn’t be me.
So what’s a sick girl to do?
This is the thing… I don’t think people understand what they’re doing when they question my situation and try solve it for me. They’re really undermining me and my intelligence. As if I haven’t had 2.5 years to think it over forwards, backwards, and side to side, with all of the information on hand about my physical and mental health, my work experience and my skillsets that literally no one else has.
I’ve thought it over and can’t see many options…. I’m literally doing the best I can with what I’ve got. And yes, I’m imperfect, because humans are imperfect and I’m a very imperfect version of a human.
All I can see is that I need to do the best I can do for myself and my health and my mind and my wallet. Which is to reduce stress in every way I can see. From hours of work, the level of stress of work, to my environment; my house, the lights, sounds, my sleep, how busy I am.
But this whole thing is fucked. I’m only 33. It’s so weird to feel like I’m making decisions about work and life that even some people in their 60s+ aren’t at yet because they’re still functioning well, even in retirement.
However, I’m gonna make the most of a weird situation and pursue my own dream. I want to live a life of freedom and getting closer to nature and people, moving around and being as off the grid as possible. Let’s see how that affects my health 😅
I also want to try figure out how to make money to support myself using my own natural skillset of talking with people and helping them through difficult times. So watch this space as I figure out how to best do that!
In the meantime, and this is a very difficult thing for me to bring up, I’m far too proud for this sort of shit, but here we are. I’ve decided to give people an option to give me a little support if they so feel like it.
As you know, I’ve been writing blogs and posting about my experiences and understandings of the world for 6 years. Including dredging up some pretty rough things in the hopes of spreading awareness and advocating for other in similar situations. I’m a big voice in a little girl, I stand up for people and I try my hardest to be there for people in any way I can.
People have shared a lot of their own trauma with me, and I’ve supported a lot of people through that stuff as much as I’ve been able to and they’ve let me. I’m also aware that there are a lot of men particularly who have voiced appreciation of my blogs and how I’ve affected their growth and understanding of a few different things.
So there is now a button on this blog that says “Buy me a beer” (cos, if you know me, you know that helps me write better blogs 😉). So if you’ve ever felt like you’ve gotten any value from me over the years, and have the ability for it, any little bit of help would make the biggest difference for me right now as I try get my ass out of my apartment, out of Auckland, and into a van!
I’ll keep writing as always, and will try figure out other ways I can bring value to you all! Also, if you can think of ways you’d want to extract value from me and particularly utilising the random things I know from my past experiences, please let me know. I’d love to see how I can expand my repertoire without my brain imploding another time. I’m a bit sick of nervous breakdowns and panic attacks if I’m honest.
And please use this as a reminder to look out for your chronically ill and disabled friends who struggle to work in a way that so many people take for granted! Finances and general life doesn’t come super easy to a lot of people. Give them a hug, and maybe a beer. They probs need it 😆❤️