Swapping clubs and gigs for hospitals and emergency rooms wasn’t how I imagined my 20s. I was diagnosed with my first chronic illness (of three) when I was 21. I was an ambulatory wheelchair user by 25, experiencing long periods of being housebound and bedbound. When I first became unwell, most of my friends didn’t know what to do, how to treat me, or even what to talk about. They were busy studying in new cities and starting their careers, whereas I was at my mum’s house, doing, well, nothing.
As a chronic people pleaser, I hated making people feel awkward. I thought it was better if I just distanced myself so they didn’t need to worry about inviting me, and I didn’t have to worry about always canceling plans at the last minute. That led to a lot of loneliness and relying on my boyfriend as my only support, particularly as my family failed to understand my illness at the start too. I’ve been sick for more of my adult life than I’ve been healthy, which has helped me learn a lot about how friendships can fit around my illnesses. Ultimately, I’ve realized that being honest about my health is the only way to create lasting connections with people.
Now, at 28, I have the smallest social life of most people I know – but I am also the most content. Here’s what I’ve learned about myself, and about friendship, over the last severe year.
Don’t mask symptoms or emotions for fear of making friends uncomfortable, tell them how you really feel.
If you are unlucky enough to be the only chronically ill person your friends know, then it’s likely there will be a lot of long pauses when they ask you how you are-and you tell them all about your symptoms and medical gaslighting.That can put you off mentioning it again. The vulnerability that comes with being honest is scary, and illness can easily make us feel like a burden. When people respond with less than ideal answers, it can make us feel worse. But what if we reframe that exposure as a chance to see who makes us feel safe? When people show you who they really are, you might be disappointed. But if you keep telling people you’re fine when you’re not, your support system will shrink even further. Often, it is only when we are truly drowning that we feel like we can be honest-and that may shock those friends whom you’ve constantly told you’re fine.
Tell your friends what you need from them-whether that’s physical help or changing the way you socialize-because they can’t read your mind.
What use is friendship if it’s not honest? These are people we have chosen to love and mutually care for, not relationships forced by proximity or family blood. We have to give people a chance to help us, otherwise they’ll never know how to do so. All friendships require open communication (particularly as we age out of the convenience of college friendships or high school groups) but it isn’t something we are taught how to do. And it can be difficult to do so, especially if you’ve felt burnt by comments in the past, like someone complaining you’re flakey, or that it’s a shame you don’t come out to the bars anymore. But people who aren’t living with a chronic illness truly have no idea what 24 hours in our body can feel like. We owe it to them to explain. Try saying, “I can’t come to the cafe because the noise and the long walk make my symptoms worse, can we meet at my house instead?” Give people the chance to understand. If they continue to disregard your needs, then perhaps it’s time to reevaluate your relationship.
You will lose friendships, and that is a grieving process that can’t be underestimated.
I know friendship breakups are easier said than done. Even though the movies tell us it’s vital to maintain childhood friendships at all costs, sometimes that can hold us back from leaving behind people who have hurt us or repeatedly failed to show up when we needed them most. Losing friends is hard enough for anybody, but for those of us living with chronic illness (who are simultaneously mourning career aspirations, bodily functions, and independence) losing a friend can be particularly painful. Take the time to grieve. As a society, we place less stock in friendship breakups than romantic ones. But the betrayal or simply just the absence of someone who has previously been around is not one to minimize. Cry and mope and wallow when you need to.
Give old friends the chance to learn. Some may surprise you and become your biggest cheerleaders.
I am the first to admit that I am stubborn, particularly when it comes to conflict. There’s always the talk about ‘cutting toxic people’ out of our lives, but sometimes that doesn’t give people the opportunity to grow and change. If a close friend wasn’t great when you first got sick, but has started to reach out or make an effort to hang out, it may be worth considering if you want to reconnect. When people show us that they want to get better at caring about disability through concrete actions, then sometimes there is a place for forgiveness and moving forward, too.
Find other sick people at similar life stages to you. It makes a difference to finally meet people who “get it”.
Although friends who have seen you through awkward teenage phases and terrible style trends know you well, it can be difficult to show those same people the current version of you-the sick one. It takes work to unveil this iteration of yourself because you may not like it very much, either. When you meet other people who are also living in sick bodies, the mask is already off. Because chronic illness is still cloaked in shame and confusion, particularly among people in their twenties, meeting others in the same boat can be life-affirming. Thanks to the rise of social media communities, there are fewer barriers than ever to finding people whose life looks like yours. I have friends across three continents to commiserate with, share small disability wins, and talk about hopeful new research surrounding our diseases. Although I have not met many of them in real life, they’ve saved my life, over and over again.
Hannah Turner is a disabled writer and journalist living with complex chronic illnesses. Her writing focuses on disability, anti-wellness culture, and pop culture. Her words have appeared in many places, including PS, Refinery29, Mashable, and Dazed.
