Maybe this sounds like it should be common sense. People should just know, you say. But what if people weren’t raised well? Like me. What if they’re kind of feral and can be thoughtless and ill-mannered socially? Also me. Or what if someone is only beginning to examine their own ableism and would like to move it along a bit faster?
I’m writing for these folks because having a friend with a chronic illness can be stressful, guilt-inducing, and confusing. You don’t know when and if you should offer help. You know that friendship shouldn’t be one-sided, but sometimes this can feel as if it is. And you don’t know if feeling frustrated with your friend’s new limitations is okay (hint: it totally is).
You are allowed to feel everything you feel. Grief, over how you’ll never go kitesurfing with them now. Resentment, that now they can’t go on that awesome Australian Outback tour you’d planned together. Frustration, over all those canceled visits when their illness flares up or they have an attack.
These are all feelings about yourself, but first off: That’s okay. You’re a person, too. And we all look through a selfish lens sometimes. Sometimes we focus on what we want from other people, rather than what they’re capable of giving and how they’re feeling. That’s part of being human. And it’s something we have to negotiate in a friendship where someone has a disability and the other doesn’t. In many ways, nothing about the fundamentals of friendship changes with disability. But in the way we approach those fundamentals, everything does.
1. If it feels one-sided, adjust your expectations.
It’s likely that you and your friend have some long-standing patterns. It’s also likely that those are going to have to change if you want to keep the friendship. I had one friend for whom I was the “cool” friend. I went to acting classes, readings, writing groups, and Toastmasters, and she tagged along. When I became unable to do all that, she came by my place once to pick up a gift I had for her. In the nearly four years since then, I’ve seen her only once. I recently messaged her when I learned that she was going through a crisis. She responded politely and suggested we meet somewhere to hang out. But when I mentioned that I wasn’t sure when I could make that happen because I’d just been in the ER the night before, she ghosted.
I haven’t heard from her since.
It has taken me a long time to see that my chronic illness left me unable to meet her expectations for our friendship. And she didn’t adjust them. Maybe I didn’t communicate the need for her to adjust them. Maybe she just wasn’t willing. Whatever the case, when a friend becomes disabled, you have to change your expectations. If you need your friend to accompany you on adventures or to reciprocate everything you do in exactly the same way, you’re going to have to revise that.
2. Be honest about your own limitations.
Which brings us to your own boundaries. No one can change overnight. So if you are a tit-for-tat person, that’s okay. Just be honest with yourself about that. If you cook for your friend and need to know that one day they’ll cook for you in return, then just don’t involve cooking in the friendship. Or work on being okay with your friend ordering takeout or serving a plate of crackers, sliced cheese, and olives.
Absolutely, you can and probably should work on your flexibility and patience through therapy and practice. But while you do that, find ways to prevent resentment. If you’re always the one to drive out to see your friend and it’s getting a bit much, admit to them that you can’t drive out that frequently or you need a break from commuting. Skype, FaceTime, and Zoom are all excellent alternatives to physical visits that have saved many of my friendships a lot of strain and trouble.
If your friendship is built on sharing fun activities and your friend has a hard time going out, take a class online together. Agree to press play on a movie at the same time, then text during (if that’s your sort of thing), and call after while you sip coffee together.
The point is, you’re allowed to have boundaries. And you need to communicate those to your friend. Remember that your friend is learning the ropes here, too. The more transparent you are, the better chance you both have of navigating this transition successfully.
3. Ask before you help.
A big frustration in the disability community is that able-bodied people will just dive in, knowing nothing about a situation, and help without asking. It can even startle people. Trust me, I learned this mistake the hard way by scaring a person in a wheelchair one time. Yikes. Don’t do that.
This could be as simple as opening a door for someone with a cane or as involved as fixing a casserole and driving it out to your friend’s house, leaving it on their doorstep unasked.
I know from the time we’re children, we’re socialized to think this is polite. It’s considerate. But the thing is, people with disabilities pride themselves on what they are able to do. Independence is a hard-won prize for many of us. This is why we have curb cuts and ADA push buttons for doors. You shouldn’t have to depend on someone else’s charity to get your groceries or your library books.
That said, we’re all different. So it’s simple: ask.
Can I get that for you?
Would it help if I grabbed the door?
Last time we talked you mentioned you’re having a hard time getting dinner together. I’d love to cook a big batch of casserole and drop it off. Would that be okay?
Sometimes the answer will be no. Be ready for that. Be okay with it. Sometimes the reason I’m not eating so well is the nausea. More food won’t help. And chronic illness, or any kind of disability, is not a mourning period. It’s not a post-surgery recovery. It’s lifelong, kids.
And exactly no one wants to feel like the way they live their life has turned them into your church charity project. If you’re offering these things because charity is part of your self-image, try the food bank instead. A disabled friend wants a friendship. This means equality. If your friend is left feeling indebted for favors they can never possibly repay, you may feel fine. But your friend won’t. And that’s a far cry from the fairness and reciprocity of a healthy friendship.
4. Educate yourself.
If you find yourself absolutely intrigued by your friend’s condition (and let’s face it, a lot of health conditions are fascinating indications of just how little we know about the body), do some research. Especially research what can make your friend’s condition deteriorate. For many of us with migraines, that includes bright light, loud noise, cold temperatures, high humidity, travel (especially after dark, when headlights always start a migraine for me), a change in routine, and a skipped or delayed meal. Everyone’s different. But you can learn a lot from organizations that advocate for people with your friend’s disability.
And then you’ll know. Okay, you can tell yourself, M.C. probably can’t do theaters, restaurants, long drives, or outdoor gardens, especially if she’s already in a migraine state. If she tries, she’ll probably have to leave early or go spend the next day lying down in the dark. Good to know. So we won’t do those things, or only if she really, really wants to on rare occasions.
5. But don’t assign yourself to their healthcare team.
However much you might learn, recognize that your friend is the expert. So please, please, please don’t tell them what treatments to try, send them emails with referrals, or tell them what to do.
Assuming authority over a disabled person’s body is ableism, pure and simple. You don’t have some special insight into disability just because you are able-bodied and read a few articles. I’ve had migraines for 26 years. I don’t know what you were doing at age 14, but I was writing papers at school on the correlation between iron deficiency (which I also have) and migraine. You are never going to catch up to the expertise of a person who has always lived with a disease. And arrogance paired with ignorance isn’t a good look, especially in a friend.
If you have the same condition, sure. Okay. It can help to say, “Hey, this really worked for me” or “That doctor/clinic/masseuse changed my life.” Totally. This is, in fact, how I found out about a balance clinic that did indeed change my life and got me the correct diagnosis for my vertigo (i.e., migraine). But even then, leave it at that. Keep your expectations reasonable. You’re not an expert on their body and brain. I have friends with migraines, and a drug that works for one of us does nothing (or worse) for the other. We even have completely different triggers. For example, sunlight is one of my top triggers. For another friend, indoor light is her top culprit. We can commiserate. But that’s about it. And we’re okay with that.
If we can get there, then you absolutely can, too. Trust that your friend is on the case. Their healthcare team has tried loads of treatments already. And chances are if something like ibuprofen, hydration, the standard meds, or a gluten-free diet (all of which I have tried) was going to help, their condition would be better by now. You also don’t know what allergies or drug reactions your friend has had. So quite frankly, telling your friend what to experiment with is dangerous and downright irresponsible. A doctor would be risking a malpractice suit doing what you’re doing. And if you keep it up, your friend will probably distance themselves for their own sanity. Save everyone the trouble, and just don’t go there. Your role here is to be a friend. So be a friend.
6. Recognize that this happens to everyone eventually. It’s a natural part of life.
Your friend is a trailblazer. Really. If your friend is in their twenties, thirties, or forties, their health has crumbled decades before anyone anticipated it. You can learn from this because you’ll be there, too. Soon enough.
In my sociology class as an undergrad, the professor assigned several essays on disability, and one in particular blew my mind. The writer, a woman with a disability, stated that disability is one of the few marginalized identities that just about everyone can expect to experience. She pointed out that aging disables us all, and that ableism is a large part of ageism. We make this assumption that if someone uses a cane or relies on a wheelchair or needs a walker and bifocals, they are less capable and their contributions are worth less.
If your plan was for everyone in society to be an Olympic gold medalist, then yeah. Sure. But this isn’t Sparta, and we need particle physicists, bookkeepers, editors, and teachers. The wheelchair was part of Stephen Hawkings’ success, not an obstacle to it. His wheels enabled him to achieve what he did. We all, at some point, will rely on accommodations to keep on achieving our full potential.
7. Basically, their chronic illness is not about you, and it’s only a sliver of who they are.
Sometimes maintaining a friendship when someone you love develops chronic illness can feel like a lot of work. Because it is. But once you adjust your expectations and your routines as friends, once you learn how to balance both your needs in ways that are achievable for everyone, it will become the new normal. And you’ll realize as disastrous as it seemed at first, as dramatic as all these changes felt in the beginning, it’s not a big deal anymore. Their diagnosis is not the most interesting thing about them. It’s not why you’re friends. You’ll always have much bigger things to talk about.
So if you stick around, you’re going to learn a lot. You’re going to learn that you should probably buy a home with an accessible, ground-floor bedroom. You’re going to learn that grab bars and roll-in showers are the wave of everyone’s future. You’re going to learn how to navigate the healthcare system on which you will increasingly rely. And you’re going to learn that toughing things out and pushing through pain is a sure recipe for health disasters.
Every healthy friendship gives as much as it gets. You may have to reframe what you give and how you get, but as long as you and your friend find value in each other and can adjust expectations, a friend’s diagnosis doesn’t have to be the end. Play your cards right, and it might just be the beginning of a whole new chapter for you both.