In the Blog
Four Things Never to Say to (this) Chronically Ill Friend
Since autumn, I’ve been home with a serious viral illness. There’s a lot I could write about my experience: the endless battles with my HMO for appropriate care; how much I’m really envying citizens of countries with universal health care; the indifferent doctors; my fears about my condition.
Fortunately, many friends and family members have been very supportive of me. Unfortunately, not everyone has been helpful. It’s led me to compile this list of the top four things they’ve said to completely piss me off.
“Let me know if you need anything.”
Actually, this is a wonderful sentiment and a great thing to say, but only if you really mean it. Making an empty promise is worse than not saying anything at all. In my case, when certain friends extended this offer, I asked them to please keep in touch more often because I was feeling lonely and isolated. Most didn’t, and it was incredibly hurtful.
Please don’t say this unless you plan to keep your word. If you can only offer a specific type of assistance – and again, you actually plan to follow through – mention that. If you can’t or do not wish to actually offer help, but still want to express some support, you can always say that you’re keeping your friend in your thoughts or sending best wishes. If your friend has a specific set of spiritual beliefs, you can also offer your prayers, to light a candle, or to perform whatever action would be most meaningful to them. Send them a “thinking of you” card or a silly postcard. Simply checking in with a sick friend every so often to see how they’re doing, whether it’s by text, email or social media, can really make a difference. Being away from work and normal daily activities can make a person feel as though they’ve been marooned on a desert island; when friends drift away the situation is even worse.
“You should try (miracle cure du jour)…”
I’m not talking about all the kind suggestions to “drink lots of fluids,” or “eat chicken soup” that seem to be automatically offered when someone’s sick. I’m talking about friends and acquaintances who chime in with unsolicited medical advice. And of course, these friends are usually offended when you don’t immediately jump on their suggestion to stop taking your medicine and rely on Super Seaweed Power Shakes instead, and imply that you must not really want to get well.
I know that most of the time, people who do this are honestly motivated by a desire to help. They see a friend who is ill and they want to provide a possible solution. Here’s the thing, though: unsolicited medical advice, diet suggestions and offers of miracle cures, especially when they are aggressively pushed, really, really don’t help. You don’t know everything about my condition, you don’t know what I’m doing in collaboration with my medical providers, and you don’t know if you’re the seventh person who has pitched a miracle cure that week. Moreover, you don’t know if that miracle cure might actually have adverse effects for me.
If I talk to you about my illness, please don’t assume that I am asking you to try to come up with a cure. I’m just asking you to listen as a friend and hold space for me.
“If you’re doing ____, you must not be sick after all.”
About a month after I first fell ill, I went to a theme park for my birthday. I didn’t do much. Most of the rides were off-limits. I had to wear a surgical mask. I took shuttles around the park because I was too tired to walk, and I only stayed for a few hours. My day basically consisted of doing a few very sedentary activities, watching a parade, eating dinner and going home. I paid for it by sleeping for the next 24 hours and being totally wiped out for the next week.
However, a few days later, I received word that a “family friend” was completely up in arms about it. According to this woman, if I was well enough to go out for a single day, I was obviously well enough to be at work full-time, and I was just bluffing by staying home. I was stunned.
It’s common for people with chronic or long-term illnesses to have good and bad days. I’m no exception there. The thing is, a good day is just that: very limited in duration. The fact that I’m able to do something fun once in a while doesn’t mean that I’m still not seriously ill, or that I’m in any way capable of functioning as I did before. When you see a photo on Facebook where I’m smiling and appear to be acting “normally,” you don’t realize that it’s one tiny piece of a very large puzzle. You don’t know how much pain I was in, how much brain fog I was having, or that after the photo was taken I put my head down on a table for an hour because I was so tired. Moreover, as many people do, I might perhaps be curating my social media to focus on the happiest aspects of my life.
Having a long-term illness does not obligate me to become homebound. In fact, it’s in my best interest to try to get out of the house as much as I can, even if I can’t accomplish everything I might want to do. Having some enjoyable leisure hours is just as necessary as the medication prescribed by my doctor – and it might do more to keep my spirits up, which helps my overall health and well-being.
“Wow, you’ve gained/lost weight/look terrible (insert negative remark about personal appearance).”
As part of my illness, I’ve had liver inflammation and damage. My liver has swollen to the point where a bulge is visible through clothing and the right side of my abdomen is noticeably larger than the left. A few people have felt the need to tell me that I’ve gained weight or that my stomach is sticking out. Well, thanks, Captain Obvious! I don’t know what my own body looks like, so thanks ever so much for bringing it to my attention! Not. I honestly don’t get why people feel the need to do this.
On the other side of the coin, a lot of illnesses and treatments cause weight loss. You might want to think twice about telling your sick friend how awesome it is that she’s dropped those 20 kgs. No, being sick really isn’t awesome, and when it wreaks havoc and causes massive physical changes, that generally doesn’t feel awesome either.
Your friend knows what her body looks like; she doesn’t need your running commentary about it. If you feel the urge to do this, just…don’t. Seriously. Don’t. It’s rude and unnecessary. That’s actually a good philosophy to keep for your friends that aren’t ill, too.
Bonus #5: “I don’t know how to interact with my friend now. I’m stepping on eggshells with all of this.”
Really, despite all of the admonitions above, it’s not difficult. What do I want people to do for me, personally? Hold space, let me talk, realize that this might not have an easy or quick resolution, and that the road to get there might be treacherous. Extend help if they can; extend support and good wishes if they can’t. Just being there can mean everything.