Living with chronic illness is hard. Loving someone who is living with a chronic illness is just as difficult. I understand the difficulty from both sides of the fence. I understand the pain and fatigue firsthand. On the other hand, I know how difficult it is to see loved ones deal with pain. Chronic pain and illness make life hard to navigate. Friendships that were at one point effortless are suddenly a lot of work. Social situations that weren’t always awkward become difficult to navigate. Things that were once funny are now offensive or insensitive. It is hard to find the right words to say.
As a sufferer, I’ve heard many things that were intended to be kind or encouraging that actually brought me down. I’ve also been the one who says these very same things! The truth is, there is no formula, but from speaking with other people who struggle with chronic illness, I’ve found that there are a handful of do’s and don’t’s that generally apply.
1. Rule one is always, always this: Please do not tell us it could be all in our heads. You may think that would comfort us somehow, but… Just no.
I know it’s hard for a healthy individual to empathize with someone who has a chronic illness. It’s even hard for us to understand! We stay up late at night wondering if we’re crazy like all the doctors say (and yes, doctors do tell us this from time to time). For you to invalidate the possibility that our pain is physically present is hurtful. Yes, thinking positive thoughts is healthy, and we know as well as you do that our minds have a huge amount of power over our physical well-being. But that doesn’t change the fact that we are in pain, regardless of our mental optimism. Even if you think fibromyalgia (or any other pain disorder) is all in the head, or that we’re crazy, just keep it to yourself.
2. As kind as your intentions may be, don’t tell us that we don’t look sick.
Truth is, we might have just put on some extra make-up to hide how sickly we look. Maybe we took an extra hour to get rid of the bags under our eyes. Or we just had a couple shots of espresso, maybe took an extra pain pill. When you tell us that we look like fine on the outside, it just means we were successful at hiding our own inner anguish. Sounds dramatic, doesn’t it? But it’s true. Sure, we could be having a good day, but tomorrow might be a different story (hence the “chronic” part). Everyone loves to hear that we look great. But don’t make it sound like an argument: “Oh, you’re sick? But you don’t look sick.” Tell us, “Wow, even though you feel like crap, you look great.” That’s much better.
3. For the love of all things good and beautiful in this world, please do not tell us you know “exactly what will cure” us.
Chances are, we’ve tried it. I understand you are trying to help. But what it communicates to us is that you think it is our fault we’re not better, that we just need to try harder, that somehow we’re doing all the wrong things. And sure, some of us might need to take some proactive steps to feel better. But chances are, most of us already have taken said steps, and it didn’t work. Or we’re trying it now and are discouraged because it isn’t working. Or it worked and then stopped working. Or it worked perfectly. Either way, we don’t want to hear about how juicing cucumbers and snuffing turmeric cured your cousin’s boyfriend’s aunt’s ex-husband’s third-grade teacher’s fibromyalgia and helped her lose 50 lbs. and run a 10K. UGH. We really just want you to accept us where we are as unhealthy or discouraged as we may or may not be. Please don’t try to fix us.
4. Don’t tell us how you feel about modern medicine and the toxicity of prescription medication.
We are desperate to feel better so we are willing to try anything from your diet fads to our doctors’ prescriptions to yoga to acupuncture to meditation. And it just so happens that drugs work sometimes, and for some, are cheaper and more effective than other treatments. “But the side effects!” Yes, they are terrible. But we take them anyway. Why? Because we have picked the lesser of two evils so we can can get up in the morning and shower, or take care of our children, or make it work on time or even at all.
5. Don’t say you get it because “you’re always tired, too.”
This one is a tricky one because we all have our own trials and hardships. We all get sick. We all get tired. We each have demons to fend off. And any and all of those things are real and valid. But that doesn’t mean that we all can perfectly empathize with one another, so when you can’t understand someone’s plight, don’t feign that you do. We don’t want to hear that you totally understand chronic fatigue because you’re tired all the time, too. It’s not that we don’t believe you–we do! It’s not that we don’t care–we do! But if you’re trying to help us cope with illness or trying to make us feel better, false empathy is not the way to go. Don’t be the “story-topper.”
6. Don’t tell us what we can or cannot do, should or should not do, or even worse: what you would or wouldn’t do.
Our limitations and our abilities are ours, not yours. We may be very different from you due to circumstances beyond our control. For example, while sleeping all day for you may be a luxury, for us, it could very well be a necessity. For you, losing weight may be something you choose to do for yourself; for us, it could be because we throw up after every meal against our will. For you, not working full-time might sound like a dream come true. For us, it could mean we gave up our dream job because we were too sick to keep up with it. Don’t imply that the sky is the limit because honestly, the sky is probably not our limit. In fact, I know my limit is much lower than the sky. And I’m okay with that. You need to be, too.
7. Thank us for showing up when you know it was difficult for us to. Appreciate our small victories with us.
When I show up to a social event on a bad day, I feel pretty darn proud of myself. You know how athletes feel when they beat a personal record? Yeah, it’s kind of like that. But when no one bothers to thank me for coming, I am hurt because I realize that no one understands how much effort it took for me. Be aware that we don’t have the energy to do all the things we used to. Be aware that while it is generally not a big deal for you to show up to social events, it actually takes a huge chunk of our energy levels to do so, even on a good day. When we say things like, “Dude, I’m just proud I managed to shower this morning,” we might not be joking.
8. We really like it when you take the time to ask how our doctor’s appointments go. Doctor’s appointments are kind of a big deal.
We know it’s weird. We don’t like the fact that our doctor’s appointments have become just as special and important as national holidays either. But that’s how the cookie crumbles. When you ask us about our new medication, or the side effects of it, or how our most recent doctor’s appointment went, well, gosh, we really just want to hug and kiss you. But we won’t because we realize how weird it is to get excited about doctor’s appointments and new medications.
9. Don’t tell us that you miss how we used to be because we do, too, and there is no way for us to bring that person back.
We have been forever changed, and that’s the reality of dealing with a chronic illness. I will never be the old Kelsey, whoever that was. Maybe we’re harder to love. Maybe we are cynical and negative. Maybe we are depressed. Maybe we are anxious all the time. Maybe we cry a lot more than we used to. Maybe we don’t hang out with you as often. Maybe we can’t be there for you as often as we used to. But we still love you. We still want to be your friend. And trust me when I say: we miss our old selves, too, but we’re having to learn to adjust and love our new selves. We hope that you can do the same.
10. We may talk about our illness a lot because it’s a huge part of our life. It’s changed everything about us. But remember that there is more to us than our illness, and those character traits could be hard to find. It’s always nice to remind us of that, too, because sometimes we just feel like all we are is sick.
We are people who have needs, just like you. We are people who are intelligent. Or athletic. Or resourceful. Or super funny. Maybe we like the same movies as you. Maybe we like to laugh. Try to remember (and to remind us of ) who we are as a person, not as a patient. We need help with that. Remind us that we are more than just sick–that we are your friend, that we are your loved one, that we are capable of being happy, that you love us for who we are. In the end, we are normal people. Help us remember that.