I may never experience the typical trappings of adulthood due to my chronic illness, but I won’t be ashamed about it, writes Stephanie Harper
For the last seven years, I have been living with my parents in my childhood home. This has been due to increasingly complex chronic illnesses that have greatly affected my ability to function on a daily basis and left me in a constant state of pain and malaise. I am unable to work full time and I need help with everything from driving to and from many doctors’ appointments each month to just taking care of the basic, everyday tasks.
I am certain that this is best option for me right now. I try to be grateful that I even have this option — that I have parents who are willing and able to help me, and that I haven’t been effectively forced into poverty as so many disabled and chronically ill people are. Still, it isn’t easy. I don’t always feel like a 33-year-old adult with my own independent life. I spend a lot of time focusing on a future where somehow my symptoms miraculously improve, and I can suddenly get through the day without napping.
For the last few years, this has all been compounded by the addition of my three cousins, who my parents became the guardians of after they were removed from an untenable home situation. Now, I live in a house of six people, three of whom are traumatised teenagers who need a lot of support and nurturing of their own.
I fantasise about how different things would be if I just had my own space, my own life
I try to balance my health needs with their needs. I try to help my parents by being a third adult presence, someone the kids can come to and count on for help and guidance. I play chauffeur when I am able, help with meals and shopping, and give my parents the chance to get out and play golf. I like to think my presence here is doing some good.
Still, it’s easy to fall into patterns of longing for a different set of circumstances; a life where I’m not sick and where I don’t struggle. I fantasise about how different things would be if I just had my own space, my own life. I cycle through this every time our overtaxed WiFi gives out or I find my work interrupted by any number of distractions. I relish in feeling sorry for myself — locked away in my bedroom, my one private space, wrapped in a blanket watching TikTok videos in the dark.
What’s more, I feel ashamed of my circumstances. I’m ashamed that I’m sick and can’t get better, and that I need to rely on others for help and support. I’ve been bottling this shame for years as my relationships suffer and friendships have even ended, because others simply can’t understand what life is like for me.
Adults are supposed to be self-made, self-sufficient, self-effacing. Their worlds are not supposed to be consumed by doctors’ appointments and tests and treatments
I struggle with how my life compares to other adults my age. I tell myself over and over again that I am doing the best that I can and sometimes, I actually believe it. But there is also that gnawing sensation of “not enough” that eats away at my core like a worm in an apple.
Sometimes I think the real problem is that you can’t be an “adult” and be sick at the same time. Adults are supposed to be self-made, self-sufficient, self-effacing. They are supposed to be struggle with choices about careers and finances, partners and children. Their worlds are not supposed to be consumed by doctors’ appointments and tests and treatments. They aren’t supposed to sleep so much. And adults are not supposed to ask for help.
Living and working from home in our crowded house of six during the pandemic has brought all of this negativity, all of the frustration and grief, to a culminating head and I have been forced to acknowledge it and deal with it.
So much of this shame stems from others’ expectations for me: people in my life, our individualistic society, and my own internalised idea of what adulthood was “supposed to” look like
And so, I have been trying to claim my shame. Instead of burying it, I am giving it space — digging into it, tracing its roots. It turns out that so much of this shame stems from others’ expectations for me: people in my life, our individualistic society, and my own internalised idea of what adulthood was “supposed to” look like.
I am working hard to separate this shame from the actuality of my current life. I am living and doing exactly what I want to be; I am the working writer I always dreamed of being. I work part time at a church, where I use my writing and communication skills to get a message of radical love and inclusion out into the world.
What’s more, I get to see my parents every day, even in the midst of a pandemic where others went months without being able to say the same. I get to walk through life with my cousins, being there to love them and support them through their own challenges. I have an excellent support system as I continue to struggle with the daily realities of chronic illness. I am living my best life in spite of everything.
But the shame isn’t gone. Growth and healing is a process, and I am making peace with my living situation. This is the first time in a long time that I have been able to live in gratitude for the life I have right now in the moment, instead of holding out for a future that may or may not come.
Featured image is of a person huddled up in a duvet. They are sitting upright and holding a mug in one hand, with the duvet draped over their head
Page last updated August 2021