Saturday, May 18, 2019

Living With Chronic Illness: What It's Helpful Not To Say

I live with chronic illness. It's depressing and hard to talk about.  It's everything going wrong and at the same time nothing actually being wrong. It's spinning in a circle and then tumbling off balance. It's fighting a war inside of your head with no battle wounds to show for it.

A quick disclaimer before I actually start talking about this: I know that anyone who has said these things to me or anyone else in the past has meant well and that you say these things because you care. And I don't blame you at all. We aren't handed a toolbox that tells us how to deal with chronic illness (although that would be helpful), so I'm trying my best here to let you know, at least from my perspective, what it's helpful not to say and what you should maybe say instead. These are not hard, fast lines. I don't have all the answers. I wish I did.  I also recognize that I am not unique in struggling with this. This stuff is difficult to talk about, but it needs to be addressed.

Don't say:
"I'm sorry that you had a bad day/month/year."
This is what it makes sense to say. Yes, it was a bad day. But I don't know when things will be good, and at the same time, things could be good tomorrow and then bad the next day, or in a week. Unfortunately, this can make someone with chronic illness feel pressure to "get better" for other people. If I could choose to stop dealing with this and wake up tomorrow completely healthy, believe me, I would. But chronic illness isn't fixed by the passing of 12 hours or however many more are left in the day.
"I know that there are bad days and good days and I'll be there for you on all of them."
This is comforting because it allows me to recognize both the fact that you care about me, and also that you, at least on some level, understand that chronic illness--mental or physical--is more or less permanent. The challenge is finding people who will stick with you in both the ups and the downs.

Don't say: "There are so many people who have it worse than you."
Who does this help? Pain-is measuring contests (as my friend called them) are completely useless. And more importantly, if you know me (or your loved one) at all as a person, you know that I already know this. I know that there are many people who have it worse off than me. I know people in my life who struggle more than I do. Additionally, many people with chronic illness, including myself, already feel like their pain is insignificant and that they should just "get over it."
Say: I believe you and recognize that your pain is valid."
In our society, we don't properly acknowledge the value of validation. People with chronic illness, especially chronic illness that is not visible to the naked eye, often feel like they aren't heard because people have to believe their struggle from hearing their words alone.

Don't say:"Oh, have you tried meditation/yoga/exercising more/a gluten free diet (and the list goes on and on)."
I find this one is more prevalent when talking about mental illness. I'm not sure why: maybe it's easier for everyone to pretend to be a therapist than it is for everyone to be a doctor. I am lucky to have wonderful doctors who will tell me if there is anything else I can be doing to make myself better.

We live in a DIY world where there are thousands of articles on the internet about how you can make your life better if you just drink more water or get up earlier. It may surprise you, but I drink five bottles of water a day, exercise at least four times a week, and do my best to get eight hours of sleep every night (except for the fact that I struggle with insomnia). I write in a journal and go to therapy. I am honestly trying my best to take care of myself, and you telling me this tends to make me feel like there's something I could be doing to "help myself," and that it is my fault that I am still sick.

Say: "I know you're doing your best. It's not your fault."
I work hard to hide pain from other people. If I am talking to you about this, I trust you and you are probably pretty important to me. This acknowledges the effort that I and many others put into living our every day lives. The second part of this recognizes that the blame is not on the person who is suffering because nobody chooses to have a chronic illness.

Don't say: "God gives you exactly what you can handle."
I am a fairly religious person, however you want to define that word, and I most certainly believe in God, but if I thought that God could stop illness or other destruction happening in the world, I would not believe in God. And probably, if I am crying or struggling, feeling like I can't handle it, it is unhelpful for you to say that God thinks I can handle it. Also, how the heck do you know what God thinks?
Say: "If you're comfortable with it, I'd like to pray for/with you."
It's hard for me to come up with an alternative for this one because it drastically depends on both the person saying it and the person suffering as to what one should say.

Don't say:"If you need anything, let me know."
At least for me, I can honestly tell you that I won't let you know because I already feel like I'm a burden by talking to you when you have your own life to deal with. I won't reach out until I am sobbing in the fetal position on my floor or screaming at everyone in sight. And I'm trying to get better at this, but it's really hard to have to be the needy friend, especially for someone like me, who would rather be the one being leaned on than the one who is leaning.
Say: "Can I come over?" OR "I'm going to the drugstore/supermarket/out to dinner, can I bring you anything?" OR "I'm always here; I'll check in tomorrow."
Alright. Let's take these in order: First, at least for me, physical presence is very comforting to me, and you just being there, either in silence or talking can be really helpful. Additionally, while I am struggling, I  feel quite alone, so if it's possible for you to be around, that would be helpful. Second, there are days when I don't feel like getting out of bed, and I also often forget to eat, so you bringing me food can be invaluable. Third, this takes the pressure off of me to reach out, and I probably will reach out again at some point, but this releases the feeling like I have to bother you again if I need something. Sending a quick text the next day or in a few days is endlessly helpful.

Thank you for reading to the end of this endlessly long post. I appreciate you trying, and I hope that this helped at least a little bit if you are feeling confused while your friend is struggling. I would love to hear your thoughts on this piece; please feel free to share.


  1. Hey,thanks for writing this. It is just how I feel myself. You wrote what I think all the time. πŸ’— God bless you, Emily.

    1. Thanks so much for the comment! I'm so happy that I could represent what you were thinking. God bless you as well.

  2. So agree with the if you need anything paragraph! So if you really want to help, don't ask...just do. Is their imagination that limited that they need to ask? I'd like to say, why yes I do need and rattle off the list etc etc etc. But instead I just smile and say, no Im fine and they walk away with a puffed out chest because it was so good of them to care. Having an angry day, can you tell?