The Everyday Phrases That Change Meaning When You're Chronically Ill

Chronic pain and illness sufferers live in a different world from those who are healthy. As with anything in life, you really don’t know what you have until it is gone. In the case of lost health, the change is shocking. There may be a lot of gnashing of teeth, screaming and crying as life as it once was slips away. We struggle with denial and acceptance within ourselves. Unfortunately, we also face similar struggles socially, and the hardest part for me is that other people may not even realize it. It is often the most common phrases that strike right at my core. Here are some of the phrases that don’t mean the same to chronic illness and pain sufferers as they do to others.

“How are you?” In general it is just the way we greet each other. It means “Hello,” “What has been going on?” and sometimes it really does mean “How are you?” To someone who struggles with their health it can be a reminder of how their health has deteriorated. How their life has changed. It is a question that some don’t feel they should answer honestly. It often feels rhetorical, or even a poke at the real situation. It is a reminder that you are no longer part of the healthy world and this question and greeting no longer apply to you.

“You look great.” For anyone else this would be a compliment, but for someone suffering from an invisible illness this can feel like an invalidation of everything they are fighting. It can be a painful thing to hear when you feel awful on the inside. Those with invisible illness fight misconceptions from doctors, employers and friends because how they look is likely a far cry from how they actually feel. For the most part I work very hard to get up and be presentable, and while this is a compliment, it somehow negates that it took me three hours to get out of the house because I had to stop and rest between each step.

“Everything will be OK.”  This is an offer of comfort in the healthy world. It is meant to give hope. Instead, this just rubs in the fact that life has changed irrevocably. It won’t ever be OK, it will be different and grieving for what has been lost is a painful reality that accompanies chronic illness. How would you feel if you really didn’t have any control over your life? If your days were dictated by your body and the harder you fought it the worse things became? What if life stopped being about a career, a romance, an adventure and became about managing pain, medications, doctors and so very much paperwork, and narrowed completely to your illness and pain and all the problems that go along with it?  Imagine if you lost your mobility, maybe your job, often your friends, sometimes even your home. “OK” might not even in the cards.

“I miss you.” This is meant to be an expression of love and longing, but it can be one of the most painful things to hear. This implies that I have control over how my life is going and that I could just get up and get back to the way things used to be if I just put a little effort into it. It also implies that who I am now is somehow less than who I was. The problem with this implication is that we probably already struggle with that feeling and having it reflected by someone you love is absolutely crushing. It just adds to a long list of losses that are beyond your control and can make it even harder to want to keep fighting.

Communication is tricky even in perfect conditions, so it is hard to be aware of the chasm chronic illness creates between a life where health is an afterthought, and one in which health dictates everything. It helps if both sides are aware of the differences in perspective and give each other some leeway. Also, try not to take it personally.

Follow this journey on Then Everything Changed.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.