If you’ve been a person with a chronic illness for more than about, oh, I’d say five minutes, chances are that you have had some kind and helpful messages from well-meaning friends and family. Messages that may have lit up your day and helped you push through a rough patch. But along with all those supportive comments comes some that’ll leave you a little dazed and confused on just how to respond.
There’s the more than slightly gaslight-statements like, “you look so great”, after you’ve spent most of your day doubled over in pain or parenting from the couch. If you have any type of autoimmune or other “invisible illness” people do actually think they are complimenting you. And I’d be lying if I said I didn’t need that reassurance—that I could fake it in society sometimes—even as I’m going through the worst symptoms of my illness.
However, some of the messages people with chronic illness get are downright hard to hear. And if you’re like me, you might simply be sick of hearing them.
The first message you’ll often here is:
“You are so strong. I could never do what you’re doing.”
This message is one of those sneaky little ones. People think they are being empathetic and encouraging, but this message is actually quite isolating. When you say this to a chronically ill person, it’s, in fact, perpetuating the lie that you are separate from being vulnerable to a chronic illness or a disability—which is simply not true. At any time and at any moment, anyone can be hit with a debilitating illness or disabling event. You are not different from us.
And secondly, more often than not, we do not feel strong. We feel weak. Because of the toll our chronic illness is taking on our minds, spirit, and bodies. Mostly, it feels like there’s no other option but to move forward. We might have more energy one day, and that’s probably the day that you will see us. We’re no stronger than any other person on the planet. And we want you to know that yes, you could do this. Because you might just have to. One in four Americans have a disability and about half of all American adults have at least one chronic condition. So instead, take this time to learn from us, empathize with us, and support us, because you might just need the knowledge we’ve gained from living in our chronically ill bodies.
The second message we hear a lot is:
“If you just think more positively and focus on that, you’ll get better.”
This message is damaging because people that are at risk for chronic illnesses often have histories of trauma in their past that has been glossed over or plainly ignored. Additionally, having a chronic illness or disability increases your chances of developing PTSD and other mental health conditions. Focusing on the positive can be helpful in many instances, but much of the time it prevents healing from things that have been very challenging in our past. We often have trauma responses that need diagnosing and attending to. And most importantly, all we wish to do is to feel positive again. You telling us that we should be more positive only reinforces just how terrible we feel about feeling terrible. Additionally, it shames certain emotions that you deem are negative. This is damaging because it’s healthy to express anger, frustration, sadness, grief, and disappointment. Telling us to “turn off” those emotions further disconnects us from our bodies when we are trying so hard to heal.
The third message we are done hearing is:
“So you’ve had x, y, z treatment. Are you better now?”
There’s a reason that our conditions are called chronic. It’s because they don’t go away. Many things can go into remission, but chronic illnesses do not tend to just disappear (although I’ll never knock a miraculous healing event). For example, even though I’ve had a kidney transplant, I will always have kidney disease. Now I will be on intense immunosuppressant medications for the next (God-willing) 50ish years of my life. Getting off of them is not an option without suffering severe consequences (like losing the function of my transplanted kidney). Additionally the medications cause many damaging side effects (such as increased risk of cancer, neurological damage, and further kidney damage just to name a few).
There’s also the unsaid message from this that is: “Can I finally stop worrying about you now?” We would like to say “Yes!”, but it’s most likely not a reality for many of us. What is helpful is acknowledging the treatments and procedures we’ve had and asking us how you can support us physically or virtually. Many of our challenges will be lifelong. Some will be less at times, but some of them will always exist. We are always looking for healing and for our health to be restored. So sometimes we will be doing better than other times, but overall chronic conditions don’t just end.
The final message we are tired of hearing is:
“My friend had that…and they are doing so much better now that they tried x, y, z.”
While this one can sometimes be a helpful message, it completely depends upon the context. The only context where it’s appropriate is if I’m actually asking for health advice? If not, please save the information for yourself. I know my condition intimately. I’ve found many healing modalities when I’ve been needing them and have been open to hearing about them. But if we aren’t asking for your help, please do not share things that you think will help us feel better. It sends the message that what I’m doing is not enough, that I don’t know what’s best for my body, and that something outside of me will make me feel better. I’ve had the most luck when I’ve recognized that the answers are already inside me or that I know exactly how to get what I need in the moment.
I know it can seem like a minefield when talking to someone with a chronic illness, but it’s actually quite simple. It really matters what the intention of your message is. If you are coming from a place of love and acceptance, we’ll feel it (eEven if you end up saying one of these messages above). We might roll our eyes a little bit, because we’ve heard it before, but we know that you love us. It’s when you try to shame or tell us there’s something wrong with us (like we don’t know!) that it becomes damaging and harmful to us. So truly, put yourself in our shoes the very best that you can, and imagine saying what you’re thinking of saying to us to yourself. If it feels like you’re saying it to make yourself feel better about our condition, best not to say it and instead communicate messages of love, safety, and support. That’s all we really need anyway. It’s hard for us to ask for help, even when we desperately need it. Knowing you are a safe place to come to when we do need help is the biggest gift you can give us.
These well-intended messages might not go away instantly for those of us with chronic illness. But they don’t have to for us to feel better. It’s okay for people to say these things and for us to have our own back on how we respond. When you know what people are likely to say to you, it’s easier to decide who you want to be when you respond. It’s usually not worth the energy arguing the point. When you step into your own authority of your life, you don’t need everyone to agree with the way that you choose to live your life. You don’t have to convince them that your way is the right way because you can always be open to learning more. But you do get to choose when and how you will have those conversations. If you’re not open to it, you don’t have to have the conversation.
How to End an Uncomfortable Conversation Quickly as Someone with Chronic Illness
- Agreeing with the person
- Finding humor in what they’ve said
- Being bluntly honest
The quickest way to agree with someone is simple. All you have to do is thank them. People think they are being helpful. So when you thank them, they often feel like their job is done. If I can find a way to find humor in the topic, I’ll bring it up. It often lightens the mood and helps us realize that this isn’t a conversational path either one of us really wants to go down. If thanking them or finding humor doesn’t close the conversation, then I move into the bluntly honest by saying something like “thank you for sharing that, I’m not open to talking about this at this time.” It saves you time and energy that are a valuable commodity by not getting entangled in a you versus them conversation. And who knows? Maybe what they’ve said does end up being helpful later to you.
Thinking about the four messages you’re sick of hearing, this is how these things could apply to those messages:
- When someone tells you a version of “you’re so strong” or “you look great”, you can agree by saying “thank you.” If it’s someone close, you might explain exactly how you’re doing. But if you don’t know them very well or you don’t have the energy to explain, simply thank them and move on with your day.
- When someone tells you to focus on the positive, you might quip back something witty. For me, I might say, yes, my donor was CMV positive and I ended up hospitalized because of it. But I do like to be positive. Thanks for reminding me. Just not too positive.
- If someone asks you if you’re better now, tell them how you’re feeling that day. Being honest, without divulging information you aren’t comfortable with, is usually the best way to respond to this. I’ll often tell people, “I’m doing well now. I’ve got some nausea in the morning and I’ve had some tremors from the medication, but overall my labs are looking good right now.” This lets them know that my journey isn’t over, but that things are stable right now.
- When people tell you about a new off the wall treatment, either thank them or tell them that you like how you’re managing your symptoms right now. If they persist, you might ask them a different strangely intrusive question about themselves. It’s whatever you’re feeling in the mood for.
The point is that you don’t need to add stress to your body’s already stressed state. Look for the good in what people are saying. Question if the words they are saying really mean what you are making them mean. For example, if someone says “I could never deal with what you’re going through,” instead of making it mean that they are pitying you and judging your life, you could also see that it’s possible they are giving you a high compliment. Both could be just as true. The suffering comes in us thinking that people should not say these things to us. And, while it would be nice if they didn’t, we don’t need them to stop for you to give yourself the love, admiration, and validation that you deserve. That’s a gift you can give to yourself. And you don’t need anyone else to do it for you (although it wouldn’t hurt if they did).
You are worthy, you are loved, and you are of infinite worth. And no one’s words can take that away from you.
