Sit With Me

“I can’t come tonight. I’m not feeling well.” 

“Won’t be able to make it. Feeling really terrible.” 

“Sorry to cancel. I need to rest.” 

If you suffer from any kind of chronic pain or illness, you have either said these words, or texted them to your friends on more than one occasion. My rough days always seem to hit me right when I actually want to go do things, or when I have something planned that I’ve been looking forward to.

Over the years, I have probably said these exact words over a hundred times. People invariably say, “Oh, wow. I’m sorry. Do you need anything?”

What they mean is “Do you need something I can buy, or make? Do you need food or something to drink?”

Honestly, it’s so sweet of people to offer this, but I don’t want any food or drink that you’re going to bring me. With my dietary restrictions, it’s probably going to be something I can’t have anyway, unless you also follow the rule of no gluten, no dairy, and no sugar. Seriously, with these kinds of restrictions in place, you can’t just run down to the grocery store and pick something up for me. Unless it’s water, or tea, and believe me, I have those in abundant supply.

And then there’s the phrase “Praying for you.”

Okay, I’m all for prayer. Really, I am, and I appreciate people who say this because I will take them at their word that they are doing it. There are people in my life who text me the prayers they are praying over me, and it has really encouraged me. But while I believe addressing God is absolutely essential to spiritual growth, it often feels like a cop-out when I’m in my bed with aching joints, unexplained nausea, and fever like symptoms. There’s only so much the words “praying for you” can actually accomplish. At the end of the day, they are just words, after all.

What do I need? What do I want? 

What I really want, what I crave, is someone to come and sit with me. That’s it. I just need someone to sit next to me and pray with me, and ask me what it feels like to be sick again. I want someone to give weight to my suffering with their presence. I need someone to sit down across from me and bear witness to my illness, and let me know that I’m not crazy. I want someone to come over and bring a movie to watch. Honestly, one of the hardest things about being sick so often is that people assume you want to be alone when you’re sick. This is why people who suffer from Lyme often say that it is a lonely illness. During times of weakness and exhaustion, we feel excluded because we are never sure if we will be able to make it to an event, and it is difficult to commit to being a part of something when we might not be able to follow through on it.

Naturally, I want to blame people for my loneliness, especially when I know they know I’m sick. “Why can’t they see that I need company? Why can’t they make time to come see me when I’m sick?” As I’ve experienced it, much of our culture does nothing for people with chronic illness, other than a pat on the back and a “You have my thoughts and prayers.” Granted, I’m living in a place where I have no family, and few close friends, so my experience of this over the past two years has been a bit biased. I know plenty of people who have strong support systems, though, and even they have admitted to feeling very lonely in their experience of this illness.

Here are a few things that are really great to bring people who have chronic illness problems:

1. Yourself– showing up is probably the greatest thing that anyone can do for someone who has chronic illness.
2. Warmth– whether it’s a blanket, or a cup of tea, providing warmth is the greatest, mostly because a lot of us get really cold really quickly.
3. Distractions–  sometimes I don’t want to talk about our pain for the umpteenth time. I just want to laugh for a little while with someone, and think about something else.
4. Time– really, if you sit with me for an hour, or even thirty minutes, you are giving me such a huge gift. Lyme can make me feel like a waste of space because I’m alone so much with my own dark thoughts. Having someone spend their time on me helps alleviate some of that thinking.
5. Help- I mean help in the physical sense. Maybe you noticed a lot of dishes in the sink, or maybe you see there’s a pile of laundry in my room. Don’t sit there praying pretty prayers. Act.

I also want to admit that I am not always good at communicating my needs as an individual. I could say to people, “Hey, it would be great if you stopped by. I know I can’t make it to this event, but I really need to see people.” (Subtext: I am going crazy, please let me know that people exist outside of this room!!!) I can take steps to change this, and I hope that writing this will help me do that.

If you know someone with a chronic illness, please don’t settle for texting them “thoughts and prayers.” Please sit with them, let them know that they are still important even though they can’t always participate in the ways they want to.

May all that is broken in you be healed. 

-Rachel