Young adults with chronic illnesses often get comments like this: “You’re too young to be so sick,” “Won’t you grow out of it?” or “You look good, so you must be feeling better.” The list goes on and on.
While good-intentioned, these comments get tiring for those of us living with crippling chronic illnesses and chronic pain. We know it’s uncomfortable for others to witness our suffering. But making comments about how we are doing without asking us does more harm than simply ignoring it. We already feel guilty for complicating things with symptoms we have no control over. So comments that invalidate our experience to make others more comfortable around the suffering feel insincere and selfish.
Some unhelpful comments include:
1. “You’re too young to be sick.”
This statement can be invalidating to the person with chronic illness. Of course, the person isn’t too young to be ill. While many illnesses begin later in life, there is no age limit for chronic illness and chronic pain. Saying that someone is too young to be sick implies you don’t believe we are in as much pain as we are, discounts our suffering.
2. “Won’t you grow out of it?”
No. Simply put, no, I won’t. Some people might, but those living with incurable illnesses like my friends and I won’t. My illness is genetic, which means it’s in my genes. And it is progressive. So no, I won’t grow out of it. In fact, it will get worse as I age. Curiously asking it is absolutely okay, but stating this question with the hopes that it’ll change the topic just shows how others are uncomfortable with our suffering.
3. “You look good! You must be feeling better!”
My looks have nothing to do with how I feel. I can look perfectly fine and be on the verge of a heart attack. I can look “healthy” when I have not kept any food down for weeks. So telling me that I must be feeling better because I look better is insulting. Instead, just ask me if I’m feeling better. Comments like this are often used to soothe the healthy person, not the one struggling.
4. “Get well soon.”
While good-intentioned, this phrase makes me want to roll my eyes. I know it’s meant well, but telling me to get well soon makes it obvious that they know nothing about my chronic illness and how it is not going to get better. It’s simply dismissiveness hiding behind niceties.
What I would prefer to hear from people in my life are questions asked with the intention of learning and listening and sincere words of affirmation.
This can look something like this:
1. “How do you feel today?” This question is enough. Then simply listen and validate what you’re hearing.
2. “I’m sorry you have to live with this” is a perfectly empathetic statement.
3. “Can I help in any way?” is a great question. But if the person says they’ve got it covered, please respect that the answer is no, and don’t try to push to help.
4. “Will doing this now make you suffer more later?” is a great question because this is how many illnesses manifest. But again, listen to and respect the answer. Don’t try to control the person’s behaviors/actions. Don’t bail just because you don’t want the person with the illness to suffer. We know the price we will pay. And if we are doing it, we accept that price.
The most helpful things another person can do for someone suffering from chronic illness and chronic pain are to be present for them. Make sure to accept them for who they are and what they can and can’t do. And do your very best to listen with a curious mind. Reflecting back on what the person with the illness is saying can be more validating than anything else. Believing in us is vital.
I can’t speak for everyone, but I can promise you that when I show pain or inability to do something, that means I am suffering a whole lot. Normally, I hide my symptoms as well. If I can’t hide them anymore, I’m nearing the edge of death. I don’t think many people are asymptomatic/unaware of symptoms until they are as sick as I get. But those who are chronically unwell usually hide their symptoms; we fake being well because being sick gets old really fast.
Featured Photo by Courtney Cook on Unsplash
How do you handle being alone? Once I had to frequently visit the hospital, I lost all of my friends, and I’m no longer as entertaining at gatherings. My former college friend stopped by my place of employment to see how I was doing. Well, my father died, and I’ve been battling Lyme illness. Oh, but are you okay, asked my pal. Actually, the first time I was in the hospital, they all fled like roaches. I make an effort to be upbeat, but when I’m in pain, it’s difficult.
After many hospital visits, I lost all my acquaintances and am less entertaining at parties. My college pal checked on me at work.
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After reading the 4 things you mentioned in this article, I also have more knowledge so that if I meet people with chronic diseases, I also know how to behave.
These comments can really weigh on those dealing with chronic illnesses. Just asking how someone feels and being there to listen means a lot. It’s about understanding and accepting their situation. Sometimes, the best support is simply being present and believing in them.
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