Words Can Hurt
"What to Say Vs. What NOT to Say to Somebody With a Chronic Illness"
Chronic illnesses can be complicated, scary, and isolating. If you are a friend or family member of somebody living with a condition, your words and actions have a lot of power and really impact the person. You can make them feel seen and heard, and like you truly care, or you can make them feel invalidated and hurt, whether the intention is there or not. One of the best pieces of advice I can give to somebody who has a loved one who is chronically ill and/or disabled, as someone living with one myself, is to really think about the words you say and the effect that something you may do has on that person.
You might be thinking that it is hard to know what the right thing to say is to someone who has a chronic illness or disability. When somebody opens up to you about their struggles for the first time or you see them going through a low valley in their chronic illness journey, you may be uncomfortable or surprised, and simply be at a loss for words. You most likely have not ever lived with the pain they experience or ever had to deal with the unbearable symptoms or side effects they face, so of course it is hard to put yourself in their shoes. That’s okay, and we 100% get that! Honestly, we may not even know what we want to hear at a certain time either. If you’re reading this and taking the time to learn a tip or two on how to make a loved one feel validated, that alone already means you want to be supportive, which is a bigger deal than you realize and a great place to start. It’s also important to recognize that these are personal opinions and experiences, and every single person who has a condition or disability may not relate, but in general these are a good basic framework for what to say and do, vs what NOT to say or do to someone living with a chronic illness or disability. We don’t want pity, advice, or judgment; just empathy and to know someone believes us and is there for us.
Let’s get some of the negative responses out of the way first that you should avoid at all costs. As someone living with Juvenile Arthritis, key word being juvenile, one of the most annoying comments to receive are responses like “What?! How can you possibly have arthritis, you’re so young!”, “I thought only old people got arthritis!”, or the all too common “Ohhh, my grandma has that, too!” Yes, kids get arthritis too, no it's not just an old person’s disease, and my autoimmune arthritis is not the same as your 75 year old grandparents’ arthritis that is from “wear and tear” of use as they aged. Similarly, one of the worst things to do is compare it to something minor. I’ve had people say they now know exactly how I feel because they twisted their ankle and it was sore for a week, had a cold and know what it's like to feel sick consistently from side effects, or had bad fatigue too because they were up late with friends all week or studying. I had empathy for their situation, but it is not the same thing. Another response that is bound to frustrate someone when they confide to you that they have a chronic illness or disability is to say “But you don’t look sick!” or “You look so normal and healthy, though!” That is the very reason many conditions like Juvenile Arthritis are called “invisible illnesses” because…you guessed it…they’re often invisible at first glance. You are almost guaranteed to have meant this to be a compliment or maybe you just truly were taken by surprise, but those comments can be invalidating. One of the hardest aspects about living with an invisible illness is that people rarely would know anything is wrong from looking at you on the outside, so they often do not believe you, think you’re overexaggerating your symptoms or limitations, accuse you of faking, or judge you for using disability accommodations because you look “fine”. Another thing you should NOT say to someone when they tell you they have a chronic illness is “Have you tried…?” From yoga, more exercise, or less exercise, to random obscure diets, celery juice, or essential oils that “miraculously cured your mother in law’s neighbor’s best friend”, most of them are entirely unhelpful and sometimes even comical. If it’s a real thing that can help, we’ve probably tried it, and if it’s not, then it underestimates the severity of our incurable condition. Similarly, some people say, “You just need to think positive!” implying that will improve symptoms, or try to find the silver linings for us and tell us why it could be worse. I constantly look for the positives in a situation and could (and do) go on and on about all of the amazing opportunities I’ve had and incredible people I’ve met that I wouldn’t have if it weren’t for arthritis. Those blessings make the situation much, much easier and honestly I wouldn’t trade those things for the world, but looking at the bright sides of my chronic illness journey still won’t fix the disease or take away the pain.
While I still remember countless horrible things friends, coworkers, or teachers have said to me many years later, I also never forget the incredibly kind, supportive things people say or do that make me feel like they truly care, even if they’ll never fully understand. One thing that is so simple yet so meaningful to me is a friend not trying to fix it or offer advice when they notice I’m in pain, but simply saying something like, “Is your knee bothering you? Ugh, that sucks. I can’t imagine.” Sometimes simply acknowledging that it sucks and admitting that you won’t know what it is like until you face it can make a person feel understood. Offering your ear if they want to rant is also a great way to be supportive, because people with chronic pain are used to hiding it all so well and putting on a brave face, but sometimes they may need to vent, because life can be hard. Going off of that, a few of my best friends who I met at arthritis camp who also have arthritis have reminded me that “it’s ok to not be ok”, and sometimes you need to hear that. I also always appreciate it when a friend checks in on me, whether it’s a simple text asking how I’m feeling when they know I’m in a flare or a friend telling me to let them know if I want to sit down for a few minutes when we’ve been on our feet a lot. I’ve had friends ask me how my pain was that day or how my joints are feeling before we make plans to see what I’m feeling up to or to know how slow I may need to take it if we have a bigger day planned, and that means the world, as I will rarely be the one to tell them I need to take a break or an activity is not going to be a good idea for me at the time. They’ve also researched the spoon theory and use that to understand my energy levels. (If you haven’t heard of this, look it up!) Finally, some of my favorite things to hear when I have to cancel, ask for help, etc. is that they’re glad I’m taking care of myself, proud of me for listening to my body, or to never feel guilty for something I can’t do. Once when I felt bad for flaking after feeling sick after my injection and waking up with horrible swelling all over my body, my friend told me, “You’re not unpredictable, your health is, and the only reason I’d ever be upset is if you think I would be annoyed for you taking care of yourself. Love you and hope your symptoms ease a little soon”, and I’ll never forget that. There are also little things you can do that people with chronic illnesses will appreciate, like friends intentionally parking close to where we are going so you don’t have to walk as far. It also means a lot when people remember random details you’ve mentioned, like that sitting on the floor is painful and then having a chair available next time before you even need to ask, or knowing I will have rougher days when it’s rainy and cold and offering to help if my joints acted up. Or sometimes, you don’t even have to say or do anything. Friends offering to just be there with you when you aren’t feeling well and there isn’t anything anyone can do also truly helps. After a procedure, one of my best friends asked if she could just sit with me, bring her baby bunnies over for me to cuddle, and eat ice cream, and that was one of the kindest things anyone has done for me.
Even when someone says or does the “wrong thing” because they simply don’t know better, people are almost always only trying to help and do not realize they may be offending the person, but it’s important to me to shine a light on the unintentional harm these hurtful words or actions can cause. So the next time someone tells you they have a chronic condition for the first time or opens up more about what they’re going through, you may not always know what to say, but avoiding the invalidating phrases, listening without offering unsolicited advice, and simply being there for the loved one is a good place to start. Ask them questions about their condition or experience (if they’re comfortable!) to better understand. Check in on them. Tell them you hope they get some relief soon, instead of to “get well soon” when they have a life long condition. Keep inviting them to things, even if they have to cancel at the last minute with unpredictable symptoms. Let them know you care. Show them they aren’t alone! Your chronically ill and disabled loved ones will appreciate and thank you.