bug reflections #2 🎧🕯️💭

on chronic illness and grieving past selves...

I want to talk about what it's like being chronically ill.

my world exists in this room everyday and the park on good days. there are worse places to be.

I've spent the last few years repeating the phrase “when I get better, I’ll [insert pre-sick activity]…” but I'm beginning to come to the realisation that there is no ‘getting better’. That the version of me that existed in a mostly healthy body, that could run and dance and work and fly all around the world, she doesn’t exist anymore and she’s not coming back.

There are a few silver linings to this of course, that version of me was definitely not my best self, but some days the positivity just doesn’t matter and all I can feel is the loss. I would read time and time again, on the many reddit boards I've joined, about the process of grieving your past self. Before now I didn’t think this was for me, I was living happily in my delusion that once I find the right doctor, once I move back to England, once I end this relationship or stop eating that food or start taking this supplement, that I will all be okay again. I don’t need to grieve what I've lost, because I’m going to get it back again, I’m going to be healthy again, when I get better you’ll see!

It's come to a point now, after nearly three years of being sick, that the reality is setting in. I've had all the blood tests and I've ended all the relationships that didn’t serve me. I've left toxic environments and I've moved back home to live with my family. I've cut out a million foods and take a million and one supplements. I've stopped working and stopped drinking and stopped smoking and stopped dating and just stopped. My lifestyle is the healthiest it could possibly be and yet… I’m still sick.

As I write this I can feel a heavy lump in my chest. I can recognise it as the grief I've been waving away all this time, but now it's finally being seen and it's ready to come out. I hate that I’m quoting a Thread in this letter, but it resonated with me so much and I think it's what finally allowed me to wake up from my delusions. It read “terminal illness is a death sentence and chronic illness is a life sentence.” Sharp and to the point- I do feel like a prisoner in my own body, and now I’m realising that I might forever.

Life as I knew it ended on my 23rd birthday when I caught covid on a stupid night out with my friends. Now i’m nearly 27 and yet I feel like I've regressed back to my 8 year old self. Living back in my childhood home, I am fully reliant on my parents to get around, I can’t financially support myself, I can’t date or drink or go out for food. I haven’t been outside past 6pm in over 6 months. And although I accept the support and am eternally grateful for it, I can’t express enough how embarrassing it is. I spent the last few years living in Thailand by myself and now I can’t leave the house on my own most days. I need my mum for SO MUCH and I can’t help feel shame, as much as she’s my best friend, it's still not what I envisioned my life to be.

I do feel a lot of gratitude. I’m grateful for the beautiful house I get to live in, the safe country, I’m grateful for my legs that keep me moving enough and my arms that keep me creating. I’m grateful for my family that supports me and for my friends that keep me sane. All the people that still love me and still come to visit me and still listen to me even when my words don’t come out in the right order. Some days the gratitude is enough and some days I just feel like I’m drowning. Life suddenly got turned up to hard mode without my permission and I feel like I’m living in one of those dreams where you’re running as fast as you can but you look down and your legs are barely moving. Sludge, purgatory, an endless game that feels like you’ve made it to the end and then suddenly you’re back to the start again.

So now it's time to grieve. Now it's time to accept that the version of me I once knew isn’t here anymore and she’s not coming back. Writing those words makes me want to scream in denial, I’m not ready to give up hope, I’m not ready to accept this as my life. I want to go to the pub with my friends and laugh and talk and sing and dance. I want to walk for miles around the city, go shopping with ease and just leave my house without a second thought. I want to travel more, I want to work and earn enough to drive and go to festivals and concerts and feel ALIVE. I want to be able to look after my parents when they get old, I want to create my own kind of family, I want to build a life.

The truth is that I believe things will still get a bit better, I haven’t given up all hope of that, but I've developed life long chronic conditions that I need to accept aren’t going away. Maybe I’ll be able to manage them better at some point, maybe I’ll find the perfect combination of pills that will make them almost disappear, but I still will never be the person I was before. I will always need to be careful and mindful of my every move, every food I eat or exercise I do or person I meet. I will live in permanent fear of catching any kind of covid or similar virus again. I will always have an incredibly high amount of support needs that will make it hard to form any kind of new relationships or start a new job. And this is something that is happening to so many people all over the world and I just feel the need for it to be heard and understood. Especially with neurodivergent AFAB people, we are all getting sick with these incurable conditions and then disappearing one by one from society, but we are still HERE.

We are stuck in these bodies that can't quite function like they once did, that make it so hard to be a part of the world, to exist on this planet, but we are still here! And sometimes it's embarrassing or just seemingly impossible to explain why we can’t do the things we once could, why we can’t meet for coffee or hangout like we did before. And it's exhausting to try and justify our needs and feel the imbalance of relationships begin to form as we ask our friends to travel to us instead or see us in the weird time slots in the day where we can form words efficiently.

I don’t even have enough space to begin talking about the gaslighting in the medial industry, the doctors that dismiss us, or simply just don’t know what to do. The lack of informed medical professionals, only the rich getting treatment from private experts in the field. We are stuck down reddit rabbit holes attempting to self diagnose and drowning in thousands of posts all coming to the same conclusion- that we are done for. There isn’t enough research, there isn’t enough information, there isn’t enough support. So what do we do? We disappear.

Im trying not to disappear, as much as my body will allow it. Im trying to see if I can still work, even if it's a couple of times a month, just to make me still feel human. I’m going to try and talk about it more, without shame or embarrassment, even if it is in the form of a substack newsletter or an instagram story. If this is my life now, then so be it, but I won’t stop creating. Grief needs to be spoken about more, every type of it, because we all feel it one way or another. Grief for ourselves, for our loved ones, for different places or time periods of our lives. Grief for a future we once envisioned thats now lost, grief for a world that doesn’t seem as bright as it once did. Being alive is really scary right now, sick or not, and I feel like talking about it helps, community helps. Talk to me, talk to your family & friends, talk to strangers online, we can all grieve together and, in sharing, make it all feel a little lighter.

This was a lot for me to share. If you’ve read this far, thank you. I’ve been attempting over and over to write another fun letter and this is all that could come out, so this is what we have. I hope it can help someone, somewhere, because it definitely helped me.

All my love,

ladybug 🐞🫶