Some things are better left unsaid, but it seems that for people with chronic illnesses, we hear a lot. Statistics show 6 in 10 adults in the US have a chronic disease. That is more than half the adult population, yet so many people are not well informed about chronic or invisible illnesses.
When interacting with people who do not have a chronic illness, some of the statements may be well-intentioned, but the delivery is so poor, it creates a barrier. It is important then to look at some of this language and really try to see where that comes from. There is a need for more mindfulness and empathy when it comes to those afflicted with a chronic illness.
Here are 5 examples of the kinds of interactions that happen frequently to people with invisible illnesses, and how the conversation can be turned around to show more empathy.
1. “I think it’s all in your mind.”
What we hear: “You need need a psychologist or psychiatrist”
I am a staunch advocate for therapy, but when chronic illness flares happen, it’s not in our heads. Having someone say that makes you question whether it may be in your head. It took me almost 13 years to get diagnosed, because a doctor said that to me when my symptoms started at 13 years old. Having a friend or loved one say that has a similar effect. It is really not the place of anyone without a medical license to question that.
Instead: “I hear you and I hope you get the answers that you need.”
2. “It could be worse.”
What we hear: “At least you’re not dying.” “Stop complaining.”
I’m even guilty of using this one on myself. There is a reason why people with chronic illnesses are more susceptible to mental health issues. Living in constant pain is horrible and it epigenetically alters the brain. Even though we’re not dying from a visible illness, the degree of pain, isolation, anxiety and all the other issues that come with having a chronic illness are horrible. Try not to invalidate very real pain that is happening.
Instead: “I am here to listen if you want to talk.” “It has to be difficult dealing with the pain.”
3. “You should try…. It worked for me”
We hear: “You haven’t tried everything to make this go away.” “It’s your fault.”
This one gets to me the most. Because the idea is that people with chronic illnesses just sit there and do nothing to better the situation. Even worse is that as people keep talking and go through the list of things like yoga, changing your diet, and a plethora of holistic approaches, you just keep praying they get off their soap box and maybe just ask questions instead. What worked for you may not work for someone else.
Instead: “What have you tried that gives you relief?” “If there is activity you want to try, I can join you?” “Have you spoke to your doctor about alternatives?”
4. You’re probably just stressed
We hear: “You’re not good at managing your life.” “You did this to yourself.”
Everyone has stress, but not everyone has a chronic illness. That statement comes from a place of a lack of empathy, and it really comes off as a way to dismiss the sufferer. It is honestly annoying, especially when you are keeping your stress level down, or you can’t help the amount of stress that is present in your life. It really places all the blame on the individual. No one wants to be blamed for their stress, because some of these factors may be fully outside of your control.
Instead: “How can I help?” “That must be hard to deal with.”
5. “You don’t look sick”
What we hear: “Are you sure this is real?” “Are you faking being sick?” “Do you just want sympathy?”
Being sick has to be correlated with looking sick for it to seem real for most people. Much of it is a lack of information. Some of it is purely people set in their idea of what sickness looks like. Can we blame them? At the same time, you know your body best, so you don’t need to prove to friends and family that what you experience is real. No one would walk up to someone who has experienced some trauma and say, “You don’t look sick.”
Instead: “ Tell me how I can help.” “I may not know everything about your illness, but I would like to know more.”
Like most people with an illness that still isn’t fully understood, we’d prefer if you would ask questions, rather than give unsolicited advice. It’s okay to not always have the right words, but also hold back on the assumption that the sufferer hasn’t or isn’t doing enough to improve the effect of chronic disease.
Do you suffer with a chronic illness? Share some of the worst things people have said to you?