Recently, the astrology app Co—Star said something pretty rude to me (lol, when does it not). It said, "Do you set people up to disappoint you?"
I read that push notification and made a face. Because, realistically? I probably do.
As I've gotten sicker, I've noticed that I get annoyed and disappointed more easily. I've largely attributed this to the facts:
- I'm literally starving
- I've got more fatigue than I know what to do with
- My heart is often beating so fast it's hard to get any rest
All of which—as you might imagine—makes me a perma-hangry perma-grump. I've even joked with my spouse that I'm a Grumpersarahs Rex™.
Jokes aside (although none of this is really funny, is it?), I'm not in the business of gaslighting myself. I know that my feels of disappointment also stem from real, disappointing behaviors.
Illness is a difficult thing to navigate in friendships. It disrupts a lot of assumptions about how life works, and about control, happiness, and meaning. It's hard to watch someone you love get really sick—and it's especially hard when you have to grapple with the fact they won't "get better."
I've been sick for 20 years, which means I've had a little time to wrestle with what chronic illness means. That's likely helped me adapt quicker as I've gotten so much sicker (that rhymes). But for the people who love me who are dealing with this level of illness for maybe the first time? I imagine it's really hard. And I have compassion for that.
Even so, it's very easy for me to forget my compassion when I'm a Grumpersarahs Rex and someone says or does something disappointing. I don't have a lot of extra energy these days and providing feedback can be really difficult—especially since I'm terrified of being seen as a burden. It often seems easier to let things go unsaid. But that just allows resentment to grow—and resentment itself requires a lot of energy, and it takes much more than it gives. It also leads to bitterness, I think.
Illness has given me a lot of pain, discomfort, and taken so much from me. It's incredibly difficult to cultivate joy these days. I don't want to be bitter as well.
There's no manual for how to care for your friend when they get sick(er). Yes, there are a lot of words written and work done about the chronically ill and disabled experience, but no two sick people are the same. The ways we prefer care are unique. That rude af Co—Star notification reminded me that I can't expect people to know how I receive care if I don't tell them. So this post is a version of that. It's not as specific as it could be, but it covers the basics.
1. Learn about my illnesses—and remember you’re not an expert.
Having to repeatedly educate loved ones about my diagnoses is an exhausting burden to carry. It can also be traumatic. I sometimes will avoid conversations with people if I know I'm going to have to do a lot of educations. Even putting in the time and effort to learn just the basics of my conditions can take a decent amount of emotional labor off of my plate. It makes me feel less alone.
Just remember: no matter how much googling you do, I'm always going to know way more about what’s going on with my body than you will. Understanding how my illnesses affect my own body is practically a full-time job. So don’t ever make suggestions, ask me if I’ve tried specific things, or offer unsolicited advice.
2. Educate yourself on the chronically ill and disabled experience.
Studying up on what it’s like to be a chronically ill/disabled person in this world (and especially the US) will help you understand some of the ableism I have to deal with on a daily basis. Follow chronically ill and disabled folks on social media. Read books. Read articles. Listen to podcasts. Whatever you prefer.
While I think a key part of this is doing your own research and finding the work that exists, two books I recommend are:
3. Invite me to things, even if I probably won't be able to make it.
Allow me to make the choice about whether I can or want to come to an event. Always provide space for me to say no or back out last minute if I'm feeling extra awful. Also, understand it likely isn't personal if I decline an invitation. If the event is food-related, or something that you see as being problematic for my body, just be honest with me about it. Let's not leave things unsaid.
4. Treat me like an adult.
There are a lot of things I can’t do these days. There are also a lot of things I can. Don’t fuss over me, make me sit down, get things for me all the time, or make a big deal about my ability without asking. Allow me to choose whether I want help. I’m an adult and being told other people will do things for me instead of being asked if I'd like them to makes me feel like a child.
5. Ask me open-ended questions.
“Are you feeling better?”
“Are you having a good day?”
"Is your pain OK?"
While seemingly kind, these are leading questions. They reveal your assumptions instead of genuine curiosity. Instead, ask me how I’m doing with open-ended questions to allow room for me to answer fully and honestly. Some examples:
"How are you doing?"
"Do you need anything?"
6. Let me know when you're thinking of me.
It’s true that I don’t have a ton of space for other folks all the time anymore. It's hard for me because holding space for the people I love is one of my favorite ways to show care.
I also know it can be hard to know what to say to me sometimes because I'm usually feeling awful. So when you’re thinking of me and don’t know what to say, just tell me that. I'd rather know that I'm being thought of with a simple text than feel forgotten altogether.
7. De-center yourself.
In the US especially, I feel like we’re taught that relating to peoples' situations is a great way to show care. But that’s not actually showing care—it's centering your experience. Don’t try to relate to my gastroparesis unless you have gastroparesis or a serious GI condition. Feeling a little sick to your stomach after you drink alcohol is not the same thing (yes, this is an actual thing someone said to me) and when you try to relate it only feels like your minimizing the seriousness of my situation.
Also, remember my illness isn't about you. Please don't tell me about how my illness has affected your happiness. It's OK if you feel that way, but I can't hold space for it.
8. Get comfortable with discomfort.
Knowing your friend is sick and isn’t going to ever not be sick is really hard.
Living with illness is harder. Sick folks are often made to feel obligated to tidy things up and downplay our realities to make others feel comfortable. Please don't do that to me.
Don't try to find a silver lining, never say, "at least," and allow space for me to not feel well. Remember that I'm under no obligation to fruitlessly seek health. Allow me to show up and be real, and to be miserable if I’m feeling miserable. I don't need cheering up. I need to be accepted for what and where I am. It’s uncomfortable, yeah, and that's OK. Friendship isn’t always comfortable and tidy.
This isn’t a complete list, I’m sure, nor is it the most tactical. But it's a start. If you want to show up for me, this is how. Illness is really lonely. It makes me feel like a burden to the people who love me. I don't want to feel that way anymore.