Trigger warning: this post touches on suicidal ideation
I’ve had quite a few new people join me here over the last week and from chatting with you in the DM's I learned that a good number of you seem to be dealing with Long Covid or other, recently diagnosed chronic conditions. I guess that's why you're here. So, hi, welcome and I'm sorry.
I'm sorry that you’ve found yourself here and I'm sorry that you’re now having to find out how little support is available for people with chronic illness. It’s a really awful place to be and I hate that so many of you are in it with me.
I want to reassure you that all the feelings you’re experiencing - rage, grief, hopelessness - all of it is entirely valid. As a society, we still just do not know what to do with people who get sick and then stay that way, and it is an incredibly isolating experience. You’re going to come up against a lot of resistance from people unable or unwilling to accept your reality - people will doubt you, blame you and some will simply remove themselves from your life because your situation makes them uncomfortable. It’s horrible and it’s hard, but it’s not your fault. None of it.
Something that helped immeasurably in the early days of my diagnosis was talking about my experiences and finding community online. You’ll be amazed how much of a difference it can make to speak to people in the same position as you and how willing people are to help each other out; whether it’s crowdsourcing useful information, sharing management strategies or simply offering a sympathetic ear. I say this with zero hyperbole: my online community and the subsequent relationships formed here have saved my life on more than one occasion. People complain about social media, and god knows it can be an absolute turd bath, but it’s been a lifeline for me since I became housebound. I don’t know where I’d be without the community formed here.
Lastly (and it’s ok if you aren’t at the stage where you’re ready to hear this yet - that is entirely understandable and valid) I just want to extend a wee bit of hope your way. Not hope for a cure, although of course that wish is always simmering on the back burner, but I mean hope that life can still be good and meaningful even when you’re sick.
In the first year of my diagnosis I felt like my life was over, and I do still have days where I just want to cry and scream about how unfair it all is but then slowly, without me even realising it, acceptance crept in over the years and with it, a happiness I wasn't sure I'd find again. Don’t get me wrong, life is still hard. Like, really bloody hard. I do struggle a lot of the time. But I’ve found that being sick doesn’t mean life can’t ever be good too.
It’s not easy and definitely never linear, but reaching a point of acceptance has opened up space for the good stuff to start creeping back in. I know this sounds twee AF, I really do, but I’ve learned that happiness is not a destination you reach once all your ducks are in a row, instead it’s a daily practice. A concerted effort to find joy in the small and the ordinary. For me, it’s my morning coffee, cuddles with my pets, feeling the warmth of the sun, laughing with my husband and my friends.
I know those things might sound inconsequential when pitted against the big things that society teaches us to focus on - career, holidays, material belongings etc - but it’s those little things that really matter I think. Slowly, I’m learning to stop comparing myself to what other people my age are doing and achieving, and to instead focus on the things I’m lucky enough to have (a loving husband, good friends, a great pair of knockers etc). I focus on how to intentionally show up for the people I love, and continue to work on practicing community care because if becoming disabled by a chronic illness has taught me one thing, it’s that interdependence is the whole point of life really, and it is bloody beautiful when you see all the good it can do when we embrace it.
For me, I suppose that’s the main goal: to just live intentionally in the day to day, soaking up all the small joys accessible to me, loving and being good to people and hopefully, when the time comes, I’ll have done enough to be leaving the world a little better than it was before.
That doesn’t mean that the grief doesn’t still overwhelm me sometimes; it will always be there. I still feel heartbroken about all the things I’ll never have or be able to do. I still grieve for the hopes and dreams I had for my life ‘pre-sickness’, and for all the things it’s taken from me. I have so many moments where I think “I just can’t do this anymore, I don’t want to be here”. It’s not that I want to die necessarily, just that I don’t want to live like this - sick and in pain all the time. And while I know a lot of people don’t like to talk about those types of feelings, I do think it’s important we allow space for them. But I also think it’s possible to experience happiness in amongst all that heavy stuff too though. The two aren’t necessarily mutually exclusive. Not in my experience anyway.
So, if you’re new to this chronic illness game, I just want to reassure you that while life will be hard a lot of the time it also can still be beautiful and meaningful in lots of small, but not unimportant ways.
It will look different to what you had planned and you will grieve that a lot, but you’ll also find lots of little joys again I promise.
So please stay, you still have so much to offer the world.
❤️
If you're struggling, please find below some organisations you can reach out to:
Long Covid Support (Long Covid specific): https://www.longcovid.org/
Mind (General mental health support): https://www.mind.org.uk/need-urgent-help/using-this-tool/
ME Connect Helpline (M.E specific): https://meassociation.org.uk/telephone-helpline/
Shout (General mental health support): https://giveusashout.org/get-help/