Hello dear friends!
I get that this type of blog post is nothing new- there are literally hundreds out there already attempting to enlighten others about what their words sound like in someone else’s ears. There are blogs from people with cancer, M.S., lupus, chronic fatigue, and a myriad of other diagnoses, all trying to communicate that some words can be hurtful and can come off as insensitive. But I figured, “what the heck”, why not throw my hat into the ring? After all, the more sources of this information that are out there, perhaps the more people will listen.
And a note to kick things off: This post is not meant to be accusatory. The vast majority of people who have said these things to me (and others like me) have had good intentions or have come from a place of concern. Others are simply uncomfortable with the idea of illness and say mindless or awkward things when confronted by it. Either way- it’s all good. There are no hard feelings here. Let’s just start over and start being mindful of how our words can be perceived by our friends, family, and strangers we meet.
Here are some of the things that we should remove from the collective conversation around illness:
1. "You don't look sick"
Well…um…thank you? I know this is well meaning, but it really does sound as if you are discounting our struggles and experiences as “sick” people. It’s probably meant to be encouraging, like “hey, you look normal, not like my aunt with cancer or the leukemia kids in the hospital” or somehow validating to hear that you “pass” as a healthy person. I know we all have this image built up in our brains of what it looks like to be unwell, and it’s strange and perhaps unnerving when someone doesn’t fit that image. But ultimately, it’s not up to you to pass judgment based on how someone appears- if we say we’re sick, we are. Trust us- we know.
If you’re going for a compliment, maybe try complimenting us on something else? Many of us put extra effort into our hair/makeup/clothes just to feel normal- perhaps start there.
2. "But you were just (insert activity here) the other day!"
This is a super tough one for most people to grasp, and also for me to try to explain. Yes, you may have seen me at the grocery store yesterday, or at yoga class- but that doesn’t mean that I am physically a-okay. Especially for those of us with ME/CFS, every day is a little different: some days I feel relatively good, so naturally those are the days when I choose to tackle things like errands and may even a walk around the park. And in general, I have to take it easy for a couple of days afterwards.
Think of it like an energy bank account: let’s say that every week I have 100 “energy dollars” to spend, so I have to prioritize things that either have to get done (like the dishes) or I’d like to do (like a yoga class). I know that if I spend a lot of energy on something that’s very costly (like a trip to the mountains), I will have very little to spend the rest of the week. This is a concept that deserves it’s own blog post, but for now just know that if you saw me riding my bike yesterday, that I’ve likely drained most of my bank account and will need to rest today.
3. "You're too young to be sick."
Yes, I understand that in today’s society we value youth above all, because we automatically associate that with health and vitality. And yes, it is an extra challenge to deal with health issues when you haven’t even reached the age of 30, but when you say this it makes us feel even worse, and even embarrassed about being at the mercy of something we can’t control. It’s like we’re letting everyone down by not being the picture of youth that is expected of us. Sometimes illness strikes during this so-called “prime of life”- so please don’t make us feel any more depressed about it by reminding us of everything we’re missing out on.
4. "I'm tired too"
You probably are tired. I don’t doubt that. But it’s probably because you are overworked, overextended, and don’t take enough time to nurture yourself. It’s not the same as having a disease that robs your cells of energy and leaves you dizzy and aching and nearly comatose at the end of the day. It’s not the kind of tired you feel deep in your bones day after day and doesn’t go away after 12 hours of sleep. Yes, most of the world is chronically tired, or as some people say as they try to make a play on my words… “chronically fatigued”. This does not mean that you have CFS. Seriously. I know you’re probably just trying to lighten the mood, but it really comes out as trivializing every one of us who deals with actual clinical fatigue.
5. "Well, at least it's not (insert horrible/terminal/disfiguring disease here)!"
This one is so strange to me, I’m not sure where to begin. Of course, I’m glad I don’t have a disease that is (read: our society perceives as) worse like terminal cancer (because nothing trumps the C-word, right?). But for you to rank our disease on the arbitrary scale of most to least terrible feels oddly uncomfortable, not to mention minimizing. This also verges dangerously close to guilt-trip territory, like you’re trying to enlighten me on some grand perspective and then maybe I’ll “get it” and suddenly be happy and gracious and humbled. I totally know about the millions of people who are worse off than me. But that doesn’t make my pain any less painful.
Those of us with Lyme or ME/CFS are already acutely aware of society’s general disapproval of us- we’re not sick enough for serious research funding, we’re not sick enough for a major national charity, we’re not sick enough to be legally considered disabled, we’re not sick enough for your time/attention/pity…Let’s not divide and rank everyone based on their presenting symptoms or prognoses.
6. "Have you tried (insert healing modality here)?"
I can tell when some people are just bursting to tell me about their friend’s cousin’s girlfriend who had what I have and that she was miraculously cured by using acupuncture/juice fasting/hypnotherapy. And I truly appreciate that you want to help me on my quest for health with your anecdotes and suggestions. But chances are that I have already tried everything I could possibly think of- most of us would go to the ends of the earth to feel even a tiny bit better. And the real kicker is that with these complex syndrome-type illnesses like Lyme, nobody knows what causes them or how to begin treating them. We’re all just shooting fish in a barrel here, especially us patients.
Personally I have tried: a vegetarian diet, a vegan diet, a paleo diet, juice fasting, green smoothies, acupuncture, meditation, yoga, EFT, counseling, napping, weight lifting, graded exercise, superfoods, massage and other bodywork, and a countless stream of supplements, vitamins, powders, and pills. Some of them are helpful, some of them not (don’t worry, I’ll be blogging about all of them in detail). Some of them were helpful for a while, then stopped being so. Some of them were uncomfortable or made me feel worse. We’re all different- even within the pool of people with CFS, every person has their own unique mix of symptom severity, biochemical responsiveness, and mental fortitude.
Additionally, there is the added element of financial frustration and embarrassment. Many of us are unable to hold down jobs, are on a fixed income, or rely on disability to pay the bills (if we even qualify), so it isn’t likely that we have an extra thousand bucks a month to blow on expensive therapies and treatments. Even eating organic healthy food is a fiscal struggle for some, so please don’t make things worse by making us utter those four shameful words: “I can’t afford it.”
And on a related note…
7. "It must be nice to not have to work"
I know that to a normal healthy person, the idea of lounging around the house all day in sweatpants sounds like a dream come true. But in reality, most people truly enjoy being able to hold down a job, contribute to society, and earn a living. It gives us a sense of purpose and self-worth. Also when it comes to school -many of us cherished the privilege of learning and working towards something great. Work is not a burden; I would trade all of my symptoms (and my sweatpants) for the chance to work a full time job again. Everyone values being independent and self-sufficient. It’s absolutely anything but a grand old time being unemployed (plus unemployable) and stuck at home with nothing to keep our minds off of how crappy we feel.
A side note: some of us chronically ill folks are doing our best to make our own way at our own pace with small businesses, blogs, and Etsy shops. It would really show your support to go out of your way to support people like us!
Perhaps you’ve thought back and found yourself remembering times when you’ve said one or more of these things- maybe even to me directly- but don’t beat yourself up about it now. The most important thing to remember when you’re conversing with someone who is struggling is to just listen. It’s surprisingly encouraging and refreshing to be heard and to be validated, especially by those people we cherish the most.
It can be difficult to see the world through our eyes, but most of us are pretty forgiving when we see that you’re trying.
So, for today...
~ Hoping you feel as well as possible ~