THE ESSAY
Writer Amy Clarkin opens up about living with M.E., missing the traditional life milestones and how she’s learned to design the life that works for her…
I’ve been haunted by the ghost of who I could have been for six years now.
[restrict]When I got sick with M.E., (Myalgic Encephalomyelitis) at twenty-five, I didn’t know that it was possible to get sick and never get better again. To me, health was a binary: you either got better, or you died. I didn’t know about this grey area of chronic illness, where you’re handed a diagnosis and told this is your life now. The words ‘chronic’, ‘no cure’, ‘I’m sorry but I can’t help you,’ followed me from appointment to appointment.
As my achievements were reduced down to ‘left the house today’, ‘sat at the dinner table with my family’, ‘only needed to sleep for three hours this afternoon’, around me my friends were advancing in their careers, travelling, falling in and out of love. Then, as the years went on, it was housewarmings and hen parties, weddings and pregnancies, promotions and adventures.
I watched it all unfold through my phone screen, delighted for their joy but feeling my heart crack as I wondered if I would ever be in a position to even dream of such things.
Gradually, I started to improve. I could leave the house again, start to see people, begin to look tentatively towards the future. And as I did, I had to ask myself: what do I want?
When you have extremely limited energy, every day is filled with choices between ‘have to’s and ‘want to’s. The ‘have to’s are practical things: food, showering, medical appointments. The ‘want to’s’ are the things that bring you joy: reading, going for a walk, seeing a friend.
It makes you ruthless. When so often the ‘wants’ are sacrificed for the ‘haves’, it means when you have precious energy available, you learn to use it on the things your heart truly wants.
When you have to deeply examine what those are, the answers may surprise you.
And when you have to change your approach to doing those things, it can be terrifying and liberating at the same time.
We live in a culture obsessed with youth and productivity, filled with ‘thirty under thirty’ lists and a fixation on monitoring how people age, and how much they have achieved by that age. When I got sick, we were at peak ‘side hustle’ culture, where every hobby had to be monetised and ‘passion’ became synonymous with ‘prosperity’. Worth was often equated with two things: what we were doing and what age we were doing it by. It set a dangerous parameter — especially when you’re a twenty-something year old who is using all of their energy simply to survive. For so long, I thought I was worthless because I wasn’t following the arbitrary timeline it felt like everyone else was on. Then, right as I was tentatively starting to look towards the future, to start to figure out ways I could reach for the things I wanted in a way my health would permit, the pandemic hit: a time where disabled people were told over and over again that our lives were worth less because we couldn’t live them in the same ways as everyone else.
The most devastating part was, sometimes, I believed them. We so often define success by how many life milestones we’ve hit: career, travel, home ownership, marriage, children: a pre-approved list to be ticked off to deem our lives worthwhile. And I looked at my life and thought, not only have I not reached any of these, I don’t know if I ever will in the way that other people do. I’m stubborn, and I’m a perfectionist. Those traits can help in some ways, but they also meant I clung for way too long to how I believed I should be aiming to live my life, instead of the ways I could. Or, in truth, the ways I wanted to.
Here’s the blunt facts, the ones it took me far too long to realise that my accepting of them is not the same as ‘giving up’.
I need to rest more than other people.
I physically cannot do the same amount of things other people can do in a day.
These limitations will affect my career, my relationships, and my dreams: my desire to travel, to live independently, to live a rich life filled with connection and experiences.
And while these things will affect the how, they don’t mean I can’t find a way. I just need to move through the world differently to others. That’s not something to be ashamed of. And as soon as I embraced that, the more the world began to open up to me.
This doesn’t come without its challenges. Many societal structures are not built to be flexible, and deviating from the norm is not often welcomed. I’ve reached a stage where I can start to try to build a career as a writer/editor/proofreader, but there are significant structural obstacles I face alongside the challenges posed by my illness. I need to work part time because of my energy limitations, and most entry level jobs are full time. When trying to look for freelance or part-time work, employers tend to favour people with a significant portfolio or who have been recommended to them by others.
It’s hard to break into these circles when you have full health — it’s even harder when you’re limited to a small number of hours a day, when you physically do not have the energy to keep knocking on doors and chasing people. My ability to work, and earn a living, directly impacts my hopes of living independently — the housing crisis, and the lack of financial support offered to disabled people by social welfare also significantly impact this. These are issues outside of my control. They are difficult to swallow and often make me hate my body for not just working how everyone else’s does.
And yet, everyone faces challenges. Everyone has obstacles to overcome. And everyone feels pressure to do things in a certain way.
My entire life was ripped out from under me. I lost everything I defined myself by: my career, many of my friendships, and my hobbies. It was devastating, traumatic, and if someone offered me a magic cure for this illness I would take it in a heartbeat. Yet, being forced to move outside of the traditional structures of life was one of the best things that could have happened to me. It helped me discover parts of me that, without it, I don’t know if I would have uncovered. For a long time, I had convinced myself I wasn’t a good enough writer to make a career out of it, even though it was my passion.
Then I became sick, and writing became both my way of processing what had happened to me and connecting with the world around me. During the pandemic, it became my escape: I wrote my first book, a YA novel that was pure escapism and is now going to be published by O’Brien Press in Spring 2023. The Amy of over six years ago would never have believed that could happen. Yes, I’m at the beginning of my career, and I’m a long way from finding enough work to support my dreams of living independently. But how many people switch careers in mid-life? How many people decide to start over? Why is there such pressure to have it all figured out right now?
So often, I look around me and a voice whispers “you’re running out of time”. It tells me that I’ve fallen behind everyone else, that I’ll never catch up. I don’t even know where I want to be running to, I just know that I’m behind. It feels like an hourglass is trickling sand faster and faster and I have no idea what happens when the sand runs out. I just know I’m failing somehow. And yet, I don’t recall my dreams coming with an expiration date.
I strongly believe that, deep down, none of us know what we’re doing. Social media highlight reels tell otherwise, and it’s so easy to look around and feel like everyone else has their sh*t together but you. That the whole world is moving on with their lives and you’re stuck in place. I think, in truth, most of us are just internally panicking most of the time, especially after the last two years. COVID put our lives on hold, and something I’ve heard echoed by many of my friends – typically healthy and chronically ill alike – is a sense of feeling like they’d ‘lost’ time, and needed to make up for it. Especially those of us in our thirties, where the spotlight really seems to focus on things like marriage and children – regardless of whether we want them or not.
Sorting out what I actually wanted from what I felt like I should want was a long process, one I’m still undergoing and that, in a strange way, was aided by my illness. When I had to make harsh, often disappointing, decisions about how I could use my energy, suddenly certain things didn’t feel as important, or the traditional way of approaching something no longer fit into the way I could — and wanted —to live my life.
Take relationships: I know I have a lot of love to give, and a desire for committed, caring relationships, but I know now I don’t necessarily want marriage, children, or to live with someone. I’ve realised that, when I imagine my future home, I see myself living alone, in a place where I can welcome the people I care about and also have my own space. After years of being dependent on other people, independence is what I crave the most. I’m also very aware of the energy I can give to relationships, not out of a lack of desire to spend time with someone but just because of the very real practicalities of having significantly less energy to share.
This has completely shifted how I approach relationships — a story for another time — but learning to be upfront and articulate my needs and boundaries was one of the best things I could have done for myself. As a chronic people pleaser, being forced to consider the ramifications on my health first has helped me to understand that saying ‘I can’t,’ doesn’t make me a less loving, or less caring person. It’s also opened my eyes to all the types of love that exist in the world. I value my friendships as much as any romantic relationship. I’m lucky to be surrounded by wonderful people who I love deeply — some of whom I met because of my illness and now consider among my closest friends — and I don’t take that gift lightly.
If I wrote a list of the ‘typical’ milestones and measured whether my life was a success based on that, it would be a failure. I haven’t achieved any of the things my contemporaries have, or that society and the media tell me I should want. And the absence of some of those things does hurt: I won’t pretend that I don’t sometimes imagine my life, Sliding Doors style, and wonder who I would be if I hadn’t gotten sick.
But here’s the thing: I like who I am now. I’m proud of who I am. I didn’t make any thirty under thirty lists, I haven’t had a wedding, or a baby. I live with my parents, and I’m dependent on them for more than I would like.
But my life fell apart and I rebuilt it. I know who I am. I know what I want, and I know it’s ok if those desires change. I’m lucky to be surrounded by people that I care deeply about, who understand the limitations of my illness while still valuing what I can offer, and who want to make space in their lives for me. There have been so many times over the last six years (and there will probably be more again in the future, thanks to the joys of a chronic, fluctuating illness) where everything in me screamed to give up hope and I kept going.
Everyone is on their own timeline. It’s so easy to get caught up in looking at other people hitting milestones, especially the ones you want for yourself, and despair. But there’s no one correct way to live a life. And learning that has been the most important milestone of my life so far.
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