Recently, I have been feeling a little disconnected from the world. There is so much about chronic illness that anyone without chronic health issues would struggle to understand, that I find it difficult to really, truly connect with people. I know that I can’t expect anyone without chronic health issues to understand. I also know that even by talking (and writing) about how chronic illness affects everything, I may be creating further barriers between you versus me; us versus them; healthy versus sick. But I am ok with that, because this message needs to be heard.
Chronic illness affects EVERYTHING. I mean, absolutely everything. Before I had health issues, I could never have comprehended the scale of it. I could have understood that it must be crap to feel ill all the time, that it must take a toll on your mental health and your ability to do the things that you enjoy. I think that most people can understand that. But the day-to-day impact of chronic illness is unimaginable. This message is so important. It is important for others with chronic illness to hear this – it is hard, and I hear you my friends. But it is also important for those without chronic illness to hear this – the magnitude of chronic illness is immense and so, if your friends who are sick seem to be struggling under the weight of it all, this might just be why.
Ok here are the things I can think of, off the top of my head, that are affected by chronic illness (for me). Some are pretty obvious. Others are darn right peculiar.
- The beauty products I buy – must be organic with no parabens, SLS, phthalates, silicones etc. The skin is the largest organ in the body (at least that’s what we were taught at school – is that really true?). Well anyway, we have a lot of skin, and what you put on your skin is absorbed into your blood stream. I actually think that everyone should avoid standard off-the-shelf makeup and toiletries but, if you have pre-existing medical issues this is perhaps even more important. This means a limited number of shops I can get these products at and of course, they are a lot more expensive. The most painful product for me is suncream. Holy moly, non-toxic suncream is expensive!!
- The jobs that I can apply for. This one I am really feeling of late. I am coming to the end of my PhD, and, like most PhD students, I am freaking out a little bit about what I’m going to do next. But, unlike most PhD students, I need a job that has flexible hours, the ability to work from home, a boss that supports those things, and where I can spend a decent chunk of my work time doing things like writing or reading, that don’t require communication or travel or other things that are very energy-zapping for me.
- The dental work that I have done. Yes, seriously. I had a tooth extracted and a bridge in its place last year, when my dentist just wanted me to redo a root canal. Alas, root canals can apparently (mostly anecdotally) cause issues for people with chronic health issues and to be honest, whether that’s true or total beloney it doesn’t really matter; if there’s a risk of it making my health issues worse, I can’t do it. So, yeah, tooth extracted.
- What I do in my spare time. Well yes that’s an obvious one. Mostly my spare time is spent doing restful activities like reading and watching tv, combined with gentle exercise when I can manage (I.e. walking), self-educating about all things health related (you would not believe the random shit I know), and cooking. Because everything has to be home cooked from scratch.
- Where we go for dinner. On the subject of food, there are now, I think 3 restaurants where we can comfortably eat without it being an incredibly stressful experience. Places that have a flexible menu and staff that are patient and understanding enough to deal with “I’d like this meal but without the chips, without the sauce, without the bread, and with a salad on the side please!” Every now and then, if it’s a special occasion, I will eat at a restaurant that I don’t deem “safe”, but I will pay some heavy consequences afterwards.
- Where we buy our food shopping. We have two stipulations: 1) we have to be able to order home delivery, because the odds of me being well enough to manage a supermarket trip are not that great (so that rules out the cheap supermarkets); 2) they have to have a good selection of organic meat and vegetables, because that is essentially all we eat.
- What food we buy. No ready meals, pizzas or chips here. There is virtually nothing we can eat that is easy. Everything is cooked from scratch. Even things like gluten free bread are so full of crap that I don’t really want to touch it, plus they normally have either rice flour or potato starch and I can’t tolerate rice or potatoes so… yeah.
- What time I go to bed. Because I need 9 hours of sleep and even a couple of nights without it starts to affect me. 9pm is my bedtime, by the way.
- What time I get up. Because meditating in the morning is really not optional if I want to try and keep my nervous system calm, which, of course is important for healing. And because rushing to get ready is about the worst thing for anyone’s nervous system. My morning routine is 2 hours long.
- How often I see my friends. Not very often, in case you were wondering. When I am well enough, and when I have had a good enough patch of health that I am at least partly on top of housework and other life commitments. Or I’m so unwell that I’ve given up all hope of housework or other commitments, and I have a friend that is kind enough to come see me even though I’ll be in bed the whole time (I currently have one friend who will do this – I hope she is reading, she is a gem).
- Who my friends are – people who I like and who like me but who are also patient and understanding, and know that plans are likely to be cancelled last minute at least 50% of the time. Many of my closest friends now are people that I have met and communicate with online, rather than in-person. I really value the internet and the social opportunities it provides for so many people who would otherwise be very isolated.
- Our sex life. Sorry to the prudes reading this but, yeah, chronic illness affects this shit.
- How we use our holiday leave. Most of our annual leave is used on doctors appointments. I am lucky I have a flexible job so that my routine appointments don’t need to involve official leave. But the bigger appointments require annual leave, and our holiday savings have been used on medical trips in the past.
- Where we can travel. Somewhere where there are restaurants that cater for complex dietary needs; somewhere where everything is within a short walking distance; somewhere where we can take a small suitcase worth of medical stuff. Hence why next year we will be revisiting our favourite Greek spot that ticks all of these boxes!
- The books I buy. This isn’t a bad thing by any means – I looooove books! But mostly they are health related books (which also isn’t a bad thing in my eyes – I love to learn about the body!).
- The house we purchased – we were previously renting a mouldy house, which can have hugely detrimental health effects, particularly for people with pre-existing health issues, and for approximately 25% of the population who have genetic mutations that prevent them being able to effectively detox mould spores. We were so worried about mould exposure that we bought a new build, almost exclusively for this reason.
- The arguments we have as a couple. Our relationship is pretty solid and I think my love will agree that chronic illness has made us infinitely stronger, both individually and as a couple. But oh Christ it is so hard on a relationship. He has to pick up more chores when I’m sick; I feel guilty when I can’t do stuff; he feels sad and stressed when I’m ill; I feel sad and stressed when I’m ill; we have to try and support each other while both struggling to cope ourselves. To every couple out there affected by chronic illness, I salute you.
- How we spend our sundays. About half of our Sunday is spent food prepping for the week. Lunches, snacks and sometimes breakfasts. Because nothing can be bought on the go.
- Our financial situation. This is largely unspoken about in the chronic illness world, or maybe just in the world generally. But I have no shame in saying, that we spend a fortune on stuff relating to health. Mostly food, because of all the reasons above. But also – beauty products (that darn suncream), supplements, having a cleaner (which, I appreciate, might seem like a luxury, but is actually a necessity), buying random things like water filters and paying for dental extractions! And these are just the day to day costs. We get substantial support with my treatment costs, which is the only reason we can afford the treatments I am having.
The magnitude of chronic illness is unthinkable. To those of you reading this who also are affected by chronic illness, I hope you understand that you are not alone. Keep going you brave, brave warriors. To those of you reading who are not affected by chronic illness, thank you for reading! Thank you for taking an interest. And thank you to those of you who provide support to me or to anyone else with a chronic illness. We could not do it without you.