FIRST…Why does being sick feel so socially awkward?
So you’re sick now. A lot of people are trying desperately to say the right thing, but just fumble. Friends and family can mean well, but can say things that sting like daggers. For them it’s probably awkward and new territory, especially for many young people who can’t relate to sickness beyond a bout of the occasional flu. Our culture also seems to worship individual independence with an unrelenting “I don’t need anybody” mission statement. The unsaid message is that being anything less is embarrassingly “weak” and “less than.” Being chronically ill breaks that strong and independent ideal, which can make it even more uncomfortable for others to acknowledge.
Here’s the reality: I’m weaker than I was and need people to help me out. It’s a weird shift of power. Good friends will feel bad with you. Others will feel bad for you. I’m not used to being pitied, and it’s an awful feeling. It’s a feeling of being judged and downgraded. I began to recognize the HUGE difference between empathy and sympathy. This is the best video by Brene Brown demonstrating the gigantic difference between the two. What we all need are more people with empathy in our lives. Ditch the sympathizers, and consider sending this video to any decent friends having difficulty with how to be there for you.
The nature of being chronically ill, especially with an invisible illness, creates a world in which you’re continually met with skepticism and dismissiveness, and not just from your average Joe, even from many uneducated doctors and medical professionals. It can easily be emotionally alienating and exhausting. It can even be devastating. Trying to be heard and understood is often a fight you have little energy for, especially when you’re just trying to endure the physical symptoms. It’s very easy to feel alone and hopeless in that dark hole, and being deprived of empathy will only make that hole darker.
You don’t have to say the perfect thing. Use a few words or make a small gesture with empathy, and you might be shocked by how much it means to the chronically ill person in your life.
I’ve been inspired by some popular lists describing what NOT to say to someone struggling with health problems. Here’s a list of things you might actually want to say to a chronically ill friend.
Some Things to Say to a Chronically Ill Person
1. I’m so sorry this is happening. This must be so hard. Acknowledging that you understand this is awful and that it’s a real struggle can be powerful to hear.
Don’t Say: Everything happens for a reason. OR God has a plan.
This is one of the worst things to hear. The message is that I shouldn’t be so sad, because this horrible thing that’s happening to me is serving some unknowable purpose. Would you feel like this was happening for a worthwhile reason if it was happening to you? And even if you believed it was in some inexplicable divine plan, would that truly diminish the pain and grief? Unfortunately not. Life is simply unfair. Good people and innocent children suffer all the time, and if there is a reason, it feels cruel. Saying, “everything happens for a reason,” only seems to feel good for the person saying it, not the person hearing it.
2. I donated to an organization doing research on your condition. I so want them to figure out a cure for this thing. One of the most touching things a friend did was donate a few bucks to a research fund looking into antibodies that could be causing POTS. She knows this thing sucks and is actually helping to find a cure or better treatments.
Don’t say: You’ll get better! You’ve got to!
If you’re not one of my many doctors, please don’t say this. Saying this is basically denying the reality of my situation. It demonstrates that you don’t really get how heartbreaking and devastating this is or can be, and instead makes me feel alone and misunderstood. The fact is this thing can wax and wane. I could get better for a while, or I just might get worse. Nothing wrong with being positive, but keep it grounded.
3. What do you feel like doing? I could push your wheelchair and refill your electrolyte drink so we can hang out at the zoo or museum for a couple hours. Show that you know that there are limitations, but you’re there to help with them.
Don’t Say: You’ve got to decide how much you let this rule your life.
Sadly, I don’t actually have much control over my body, and hearing this can make me cry, because I wish so desperately that I did. The point is that I don’t get to decide. I don’t decide when I feel like fainting or get the worst nausea ever created. Hearing this means that the person really doesn’t get what it’s like to be this sick. They think living your life with limitation is at least partly a choice. I don’t get a vacation from my body or senses, so instead I change my life to minimize how terrible I feel. I don’t get to run errands all day or run a 5k or even go for a walk in the summer heat like I used to. The sad reality is that none of this is a choice.
4. I know you have a hard time with your appetite. Here’s a green smoothie website I found that might help you keep up your calories and nutrients on days when you can barely eat. Or… Have you tried this recipe? It’s really salty, and I know you have a hard time getting in all the salt you need. I think you’d like it! Try offering something that shows you understand a little bit about the person’s needs and what they’re going through. It’s about helping deal with their symptoms and struggles. It can be deeply touching, and you might blow your friend’s mind.
Don’t Say: Have you tried eating really healthy?
Be careful suggesting something very general and simple. I think statements like this can demonstrate how uncomfortable people can feel with a lack of control. They want to believe that a person can control their own health by simply eating better. Being sick for no apparent reason makes many people uncomfortable and squeamish, because it could just as well happen to them. Almost like a form of denial.
If eating “healthy” was a cure, I wouldn’t have gotten sick in the first place. Of course eating well can only help, but for many chronically ill people eating at all can be a struggle. It can feel insulting to hear this, as if I’m not eating as well as possible already and that the solution is at the local Whole Foods. The underhanded message is that this thing could be really easy to treat. I mean, I do wish eating lots of kale could prevent me from passing out all the time, but it demonstrates a lack of understanding of how complex and difficult the illness is to live with and treat.
5. What are you able to do these days? You want some company… I can bring over a RedBox and some food you might like? Or we can hang out at my place if you’re up to it? Life might not the same and yeah it can be boring, but it’s amazing to have friends that still care and want to spend time to help shake things up.
Don’t Say: What do you DOOO all day?
This just sucks to hear. It reminds me of all the stuff I used to do everyday and can’t. It reminds me of how boring and lame my life must sound to a normal healthy person. I’m not saying don’t ask… just be a little kinder about it. These days I respond with, “what do you do when you have the flu all day?” Then laugh and go on to explain my home-body activities and how Netflix is amazing.
I tailored a related post just for families and close friends. Please read How to Help Someone with Chronic Illness.