Chin Up

I was sitting in a doctor’s office this morning when I noticed a glob of children’s toothpaste smeared on the back of my hand. It had been hours since I’d brushed the kids’ teeth, so I only knew what the sticky goop was because it was blue and smelled like fake fruit. It was a bit discolored from all the sweater fuzz clinging to the surface, and I was worked to rub it off without drawing attention to myself, I thought this is going to suck. Honestly, most appointments do suck, but I should go in with a positive attitude, right? Positivity is key!

As a general rule, I assume everyone is doing their best at all times and, unless you stormed the capital on January 6 or murdered your neighbor, you are generally a good person. If you say things that are clumsy or offer advice that is misguided, it’s not because you’re a terrible human being. It can make people uncomfortable to discuss situations that don’t have a clear happy ending on the horizon, and in those instances the “wrong” things generally flow forth unchecked.

I wish this was a post with a helpful list of things to say to someone whose health will never be “all better,” but no such list exists. There are certainly better things to say, like a specific check-in after a doctor’s appointment rather than asking when I’ll be feeling healthy so we can do something you’ve planned (I am not, nor have I ever been, in charge of when I’ll feel better). But humans are varied and complicated and so are our lives, so I’m afraid there isn’t a checklist of things to soothe the psyche of a chronically or terminally ill person.

We have an obsession with positivity and optimism, and our desire to always be improving or pushing or changing. When someone comes to us with a problem, we assure them it’ll be okay, everything will be fine, they just need to keep fighting. Square your shoulders. Face the challenge head-on. Tell yourself you will win. The opposite would, I suppose, be harshly suggesting a friend who is very ill might soon die, so let’s not swing the pendulum too far, but blind optimism in the face of bleak medical diagnoses is a clear way to show that you’re uncomfortable. Most people are uncomfortable when it doesn’t seem like the right thing exists to say to comfort a friend or family member. We search for a connection to help us understand (I had the stomach flu once so I totally get it!) or blurt out pie-in-the-sky junk (there’s going to be a cure any minute now!).

If you tell a person with a disease that has no cure that they need to keep trying to fix themselves, that’s shifting the blame onto the patient. You are only not better because you aren’t trying, or you haven’t bought the smoothie powder I recommended. No, friend, I am not better because I have an incurable disease that doesn’t give a shit what’s in my smoothies. It’s frustrating to want to spend time with a friend only to be told that they are, in fact, still sick, and I think most of us know your frustration isn’t truly with us, it’s with the sickness itself. But if you are frustrated when you find out we have to cancel our dinner plans, imagine how frustrated we are, spending twenty-four hours a day living with a relentless illness?

You can always wish or pray for us to feel better, and we pray for it too, but the constant brush-off of, “you’ll get through this,” or, “it’ll hurt less soon,” is not helpful when there is very literally no positive end in sight. Until there is a cure, I’ll be sick. Until a cancer patient is truly in the clear, there’s no rest. And worst of all, if a patient has been told by experts that the very limited future they now have is bleak, don’t ignore that. We know you want to fix it for us, but if you can’t, and we can’t, and the doctors can’t, then it’s more helpful to sit with us while we sit with our grief. This goes for anything tragic, like losing a loved one. Some people thrive on positive thinking and will appreciate being told to buck up and look to the future, but it might come off as discrediting their pain. What you’re feeling now is not what’s important! In a year you will have recovered! Or if they’re going through a difficult divorce, you’ll find someone better and this will all be a funny story someday!

Sitting with pain, grief, and fear is hard work. Having a friend or family member sit with you is a life vest to make sure your head stays above water. I don’t often feel like I need to sit in anguish the way some of my compatriots with chronic or terminal illness might, because my health is relatively stable, though stable at a level that a healthy person would consider unacceptable. Still though, if I’m having new symptoms or struggling with medication side effects, realism is my preferred method of coping.

This is not to say sick people want to wallow in their problems or that we don’t want your thoughts and prayers. Please, cover us in prayer or good vibes or whatever your preferred distribution of positivity might be! Telling a sick person whose disease has no cure to keep calm and carry on and try going Paleo because it totally worked for your cousin’s boyfriend’s college roommate is ignoring the situation entirely. Some people somewhere might benefit from a fad diet to help manage symptoms, but don’t assume we just haven’t heard of quitting dairy products and that’s why we’re still sick.

We understand. It’s difficult to see someone be sick for even a day, let alone a lifetime. But if you’re waiting to be a friend until we feel better, you’re missing our lives entirely. We won’t always want to be held while we cry about our limitations or the trajectory of our lives, but a person who is there to process the very real fears we are confronted with will be there to celebrate the good days that, for some people, are rare treasures.

If you’re presented with tragedy, yours or another’s, search for what is truly needed. If the person generally gives out positive bumper-sticker slogans when confronted with the troubles of others, perhaps that’s what they’d like from you. When the reality is complicated or bleak, ask what you can do to help. If the answer is truly that there is nothing to be done, they’ve gotten the second opinions and tried the treatments and then tried the alternative treatments, sit in the grief. Don’t throw out bogus internet “cures” when what’s needed is grounded honesty.

For me, I need to talk out logistics. If my current fear is a massive flare that will put me in the hospital, what I need is to produce a game plan for my husband and the kids in my absence (though deep down I know they would be fine because my husband is a very involved dad and honestly he is the fun parent and the kids would have a blast). You can tell when I’m worried about stuff like this because I will randomly insist my husband walk with me to the drawer that has the travel tissues and extra antibacterial so he knows where it is “in case I’m not here and the kids need it for their backpacks.” Sure, you could tell me everything will be fine and I won’t end up in the ER, but realistically it’s very possible and it’s more helpful to me to feel that when that happens, not if, everything will be okay.

One thing to note: the way outsiders brush off tragedy or challenges is similar to the way people going through challenges brush it off themselves. If you’re searching for a way to help and are met with, “I’m doing fine!” and an abrupt change of the subject, the thing they need is not to talk about it at that exact moment. It still feels good to be asked, but if you’re having a brief reprieve from thinking of yourself as the troubled friend, you might not want to sit with those familiar feelings and instead spend some time as a “normal” person.

We take all your efforts as a show of love and care, but every person will need different care each day. Be willing to get uncomfortable if that’s what a particular tragedy requires. Your loved ones will appreciate it.

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